Redheaded Step Child…

First, I made it to Philly. My mother and I have gone shopping together and we are waiting for my various siblings and their families to join us for dinner! I am very glad I could make it and I am glad my brothers and sister (and their families) will get an opportunity to see me before I start chemo/radiation, etc.!!!

Last night, after I had (mostly) recovered from my “porting,” I went over to the karate school and helped out with class. The main reason, though, was (a) so that “my” students (Thank you Mr. Quinn for allowing me to teach at AK) could see that I was up and about, and (b) so that I could reconnect with Ayanna TooveyGreen. Ayanna’s son had been taking karate at AK prior to my starting, but he was always “Smylon” and a (generally) happy disposition. Ayanna re-married last year to a man in the military and they were, sadly, re-stationed in Arizona. Earlier this year, Ayanna and her son moved and left a void in the AK family. Happily, though, Ayanna and her son were back in town and I wanted to spend time with them.

Her son is less than pleased with moving to Arizona (as he essentially lobbied everyone at the school for sanctuary (from Arizona). Ayanna, who is pregnant with a little girl, was met with hugs and kisses from both students and parents alike! So much so that, when all was said and done, I had to wait until after classes to get some time to sit down and chat. So Ayanna, her cousin, Star, and I went to get something to eat, and here is where the title of this post becomes germane.

We got dinner at a food court at a mall owned by the Simons corporation. Hanging in the food court was a huge banner that said Simons would donate $1 to the Susan G. Komen for the Cure fund. Now, this post in no way should be interpreted as suggesting that donating to support breast cancer research / treatment is not appropriate. Instead, it highlights my perception that pancreas cancer is the redheaded step child of cancers.

I had noted, while visiting the oncologist, a sign that listed a variety of awareness ribbons for different kinds of cancer: breast cancer (pink); prostate cancer (blue); leukemia (orange); bladder / liver cancer (yellow); etc.; however, there was no listing for pancreas cancer (though, I have since learned that “our” color is purple). Indeed, on the sign at the oncologist’s office, pancreas cancer would have been represented by the lavender ribbon (CNOS – “cancer not otherwise specified” — that was my interpretation; the sign did NOT say that)!!

I understand that pancreas cancer is very rare (an incidence rate around 0.01% in the United States, in general; even more rare is being diagnosed with pancreas cancer under the age of 50), but it remains the 4th (or 5th depending on the source) leading cause of cancer-related death in the country. Despite its prominence as a leading cause of cancer-related death, there is relatively little advocacy for pancreas cancer. Awareness was raised when Patrick Swayze announced he had it. Moreover, I have spent some time reading Dr. Randy Pausch’s blog and once the video of his “Last Lecture” became so popular on the Internet, he wrote that he was going to use his “D-list celebrity to do some good.” So he has recorded some public service announcements about pancreas cancer and even gone before congress to testify (check out his website for clips of his PSAs and his testimony). By the way, Dr. Pausch added to the information he talked about in his lecture and it is now available as a book (also entitled The Last Lecture).

His example has motivated me to do something, but I’m not entirely certain what. If nothing else, perhaps this blog will help others (outside of those affected by MY having pancreas cancer; a friend of mine, Renee, told me she shared my blog with a friend of hers who has severe environmental alergies who, as a result, lives a very isolated life. Renee told me he found some solace / inspiration from my blog). Feel free to let me know if you have any ideas!

There I go being all verbose again…

Merle

Porting and Celebration

First, I am ported! Dr. Staley did a great (and swift) job putting in a central line with a titanium port. I was in and out in just three and a half hours. My shoulder is a bit sore, but otherwise I’m okay. I’m home doing some work and unless something dramatic happens overnight, I am very much looking forward to seeing my mother and siblings (and their families) tomorrow. One can only hope that the rest of my journey is equally as easy.

Yesterday, I had another opportunity to stop and enjoy my family as we celebrated my younger son’s 11th birthday. We went to Dave and Buster’s; we ate, my son opened his presents, and then we spent an hour and a half playing games in their midway. Afterward, we dropped MaryBeth and my daughter off at home, and I took the boys to go see Iron Man. My son felt celebrated and we all had fun together. Instead of worrying about work (sorry Kathleen, Joyce, Jim), I enjoyed time with my family.

Merle

ps – Many of the comments people have been nice enough to leave me have expressed that they are impressed with m writing. In turn, I remain in awe at how poetic many of the comments are. Thank you, not only for the support, but the eloquence and passion with which you give it.

And the Journey TRULY Begins…

Up until today, all this talk about pancreas cancer, treatments, journeys, statistics, etc. has been theoretical.  The ideas were abstract; they were something that will occur in the future and it was very easy to “brave” and matter of fact about what was going to happen because it was going to happen in the future.  It’s one thing to wax philosophic about the what the next six weeks were going to be like with all the radiation and chemotherapy that I will experience; it is a completely different beast today, as I get ready to have my chemo port placed.  A friend wrote me an Email yesterday wondering if I was particularly nervous about today.  My initial thought was: “Not really” but then I began to think. 

Now (if I understand it correctly), putting in the chemo port (a.k.a., a “port-a-cath”) means putting in a catheter, similar to a  PICC line (peripherally inserted central catheter), into the upper portion of my torso. Unlike a central line, though, the chemo port lays under the skin, so it is less obvious.  The purpose for both the chemo port or a PICC line is to provide easier access to my vascular system, allowing my doctors to draw blood and infuse medicine without having to stick me in the arm (for example, to put in an IV) each time.  It is a very routine procedure and there is relatively little risk to me today.  HOWEVER, what this does mean is that the abstract musings of the last 30 or so posts come crashing into the very concrete (wall) of reality today.  Today, my pancreas cancer is just a little bit more real.  Today, if nothing else, I am stepping up to the starting line of the REAL journey with this illness.  Today, philosophy be damned.  Today, I really do hope that what is important *IS* the journey, rather than the destination.

In recent days, I have had several folks from my old high school post comments on this blog.  It was great to hear from Darrell and Jim (two people who, for all intents and purposes, I had not heard from in 20+ years).  Last night, though, a very dear friend from high school left me a message.  She said (paraphrasing): “While I hate that you have to take this journey, I’ll be there with you!”  Kathy was one of two fellow students from Easton High School with whom I have kept in touch (Gary, my other friend, is a radio personality, turned brewmaster, turned chef — including a stint as an executive chef for the CIA for which he once had the opportunity to cook for POTUS, turned restauranteer).  I am truly glad to have both along for this particular road trip (and this time we don’t have to cram into my Mom’s VW bus for hours on end)!

I will post later about how the procedure went and my very enjoyable day yesterday celebrating my younger son’s 11th birthday.  Right now, however, it is time to load into the car and go to the hospital!  More when I get back!

Merle

Culturally Immature?!?

So last night, I decided to take my wife for dinner and a musical for our anniversary (rather than dinner and a movie, which is our typical date routine).  Dinner was at an English pub called The Spotted Dog and was pleasant (nothing great, but okay).  We then walked over to The Fabulous Fox Theater for opening night of Sweeney Todd.  Unfortunately, I have to admit that I must not have a well developed sense of culture to appreciate this show, as I found myself falling asleep more often than not during the first act.  Moreover, at intermission, my wife and I (along with probably 2-3 dozen other people) opted to leave.  For both my wife and I, the show just did not captivate us like Wicked, Cats, or A Chorus Line or any number of other musicals we have seen over the years.  My wife, however, appreciated the gesture and we both enjoyed having time together sans kids (if only for a few hours).

I have been thinking about the randomization outcome and I’m trying, as was suggested by a colleague, to (again) reframe: 

  1. While TNFerade looks promising, its effects (including side effects) are somewhat still unknown.  It is possible that I might have had a bad reaction to the drug / procedure. 
  2. While perhaps not the most aggressive therapy, 5FU+ radiation (which is the treatment in the standard of care arm) is still a commonly used neoadjuvant therapy.
  3. My time at the hospital will now be substantially shorter.  In the experimental arm, I would have had CT- and Ultrasound-guided intratumor injections.  This would have required conscious sedation and significant post procedure observation (looking for potential side effects).  Thus, instead of having to be at the hosptial all day on Mondays, it looks like perhaps only half a day or less.
  4. From what I’ve read, several people in my position recently have had successful tumor shrinkage on 5FU and radiation alone, leading to successful resection of the PC (via the Whipple procedure).

Finally, last year was really the start of my medical problems.  Having not had any surgery in the 40 years prior, in 2007, I had both rotator cuff surgery and gall bladder (removal) surgery.  By mid August last year, my family had met our catastrophic deductible ($4,000) for out of pocket expenses.  The nice thing was that all doctor’s visits, medications, etc. from mid-August through December were free, as long as we stayed in network.  This year, I reached the catastrophic limit ($4,500) by mid May.  There are not a lot of financial perks working as a Federal employee (at least in my capacity), but I am very grateful for the excellent health insurance!  (Of course, I talked with my cousin Ele this past weekend; Ele is a lawyer who works for a firm in the northwest that takes cases involving insurance companies not treating their clients fairly, so if I do get into trouble with the insurance, I’ll know who to call!)

Cheers,

Merle

The Need for Serenity…

First and foremost, I want to take this time to wish my wife, MaryBeth, a Happy 18th Wedding Anniversary (and NO!  my need for serenity does not have to do with my anniversary…just read on, and stop jumping to conclusions!) 

Where to begin?  The funny:  My oldest son (who has Asperger’s Syndrome) made a friend (also with AS) this year.  MaryBeth and I were very excited and encouraged my son to spend time with his friend.  One of the challenges that kids with AS face is the difficulty of getting along with peers, so when my son found a friend, we were very happy.  Well, when I was diagnosed, I called the friend’s parents to let them know (just so it wouldn’t be a shock if my son came over and, out of the blue, announced that I had cancer).  So this weekend, I dropped my son off for an overnight and his friends parents relayed a story:  It seems that the friend’s parents had told him that this wasn’t a good time for him to come over to our house (they didn’t want to add to the stress / confusion already in existence).  Apparently, while they were picking up their son from school one day they saw my son sitting off to the side.  They said ’Hi’ to my son who replied, “It’s okay for [my friend's name] to come over.  My Dad has cancer, but he’s not contagious!”  Good thing I’m not contagious.

Okay, so now for the somewhat funny.  When MaryBeth and I met with the coordinator of the clinical trial a couple of weeks ago, she told us of a person who had registered into the clinical trial but was randomized into the standard of care arm (and thus would not get the experimental TNFerade injections).   Well, this person was not to pleased with the results of the randomization and dropped out of the clinical trial.  Apparently, however, the individual then traveled to another site running the same clinical trial and tried to enroll there.  What the person didn’t understand was that the randomization for the clinical trial is conducted at a central location, regardless of which clinical site you go to, so once your randomized, there’s no changing.

And now, the not so funny / somewhat serious:  I found out today that I have been randomized into the the standard of care arm so, like the individual I just mentioned, I will NOT be getting the experimental treatment that looks so promising.  CRAP!  You know, at church this weekend, a good friend (Anna) told me that she always knew I was a “fringe” person (suggesting I’m “out there!”), so it’s no trouble for her believing that I will be in that 4-5% of the people with PC that make it to 5 years.  Along that same line of thought, given that I have developed a disease with a prevalence rate of around .05% in people my age, it’s not surprising that I have been randomized into the less probable arm of the trial.  The protocol calls to enroll 2 people into the experimental arm for every 1 person in the control arm (thus, I had only a 33% chance of getting into the control arm).  Hmm, maybe I should go buy a lottery ticket — talk about low odds of ‘winning’! 

All joking aside, I do believe in the importance of the research, however, so I will stay in the clinical trial; it is important to have a control group that does not receive the experimental treatment against which to compare the results of those from the experimental group.  I will still be receiving standard of care, which may be effective in reducing the tumor: that still remains the goal of this neoadjuvant therapy.  This turn of events also solidifies my desire to go to Hopkins for a surgical consult after treatment.  I just found out, though, that Dr. Cameron goes out of town for 2 weeks (mid August until after Labor day), so I’m not sure I’d be able to get in for surgery before he leaves.  I guess that’ll all be a bridge we can jump off of when we get to it, though.

So, keep the happy thoughts / prayers / well wishes coming.  Support me as I try to find some serenity in dealing with this unexpected outcome of randomization.  Today is my anniversary, and I’m looking forward to enjoying an evening out with MaryBeth (thanks to Chris volunteering to watch our kids).  So my job today is to get over my grumpiness so that we can enjoy this evening. 

Take Care,

Merle

Too much…

I was told by some friends from my church yesterday that perhaps I was writing TOO MUCH on my blog (I think one of the descriptions about the blog was ‘verbose’). I have to say that I do tend to be quite talkative and every now and then I actually say something meaningful. So I’ve took yesterday off from writing so that those of you who are having trouble keeping up, will have a break! :-)

As I mentioned in my post on Saturday, I spent about 6 hours helping my friend Luis build retaining walls around the two trees in our front yard. Unfortunately, I think I pushed myself too much, as I started really feeling poorly at the end of the 6 hours and again for much of Sunday. I think this is an unfortunate side effect of my illness; in the past, I might be tired after working for 6 hours, but I wouldn’t feel as physically badly as I did. I have never been a big ‘napper’ but it is likely that I will have to learn, as I presume I will be likely to get more and more tired as my treatment regimen continues.

I am pleased to say that it looks like I will be able to travel up to the northeast to visit with my family. My brother-in-law is a pilot for Delta and he was able to provide me with a buddy pass. Originally, I was going to fly out on Friday, but it appears there are some flights on Saturday that I can take. Now, I’ll be traveling non-revenue, so I only get a seat if one exists, but it seems likely (at this point), that I’ll be able to fly up on Saturday and back on Sunday (presuming I am sufficiently recuperated from having my port “installed” on Friday).

Some final thoughts for today: on Memorial Day we remember those men and women who died while in a branch of the United States military. While out driving today, I saw a sign that said: “Patrick Tillman; you are my hero!” For those of you who don’t know (and choose not to follow the link), Pat Tillman was a professional football player who left his high paying job playing for the Arizona Cardinals and enlisted in the United States Army. Tragically, Tillman was killed while fighting in Afghanistan. I understand how someone could see Tillman as a hero; in our materialistic society, here is a professional athlete (a group that, on the whole, are often seen as overpaid for the services they provide) that left a lucrative career to follow his beliefs about the importance of serving his country in the military. He should be commended for following his values and I grieve with his friends, family, and fans at his death. I wonder, though, if such a sign might be seen as minimizing the deaths of less famous men and women in military service? I certainly could imagine how someone who had lost someone close to them to war might take offense at calling Tillman a hero.

Currently, over 4,000 soldiers have died during the Iraq war.  While this war seems to be increasingly unpopular, I urge each of you to take a moment to remember and honor the sacrifice of all soldiers who have died in service to the United States and respect those who have served or are now serving.

Merle

Today was a good day…

Early this afternoon, Becca, one of our babysitters, called to invite our family to her graduation party — this evening. MB and I chortled to one another about issues related to advanced planning, but we gathered up the kids and went on over. It was an interesting collection of people attending this party — of course Becca’s family was there, her Uncle Kenny, Charles, her Life Teen facilitator (or whatever his official title was), a friend of hers, and us. It was a wonderfully sweet gesture to include us in her celebration and we wish her all the best as she goes onto college. And besides, her mother made and decorated a WONDERFUL homemade cake — and any day is a good day when you get to eat cake!

As we were leaving the party, Charles took my hand, looked me in the eye and told me, “Every day is a miracle.” He wished me well, as did Becca’s parents and we came home. However, as I sat here thinking about what to write, I was able to reflect on today and realize that he was right — at least about today. As a good Unitarian, I went to Dictionary.com and looked up definitions of miracle. (When I graduated high school, my mother bought me this HUGE dictionary; I am pretty sure it was called, “Websters Super Deluxe, Ultimate, Unabridged Dictionary of Every Word in the English Language.” Of course, it’s now called ‘doorstop’ or ‘paperweight’ because I tend to look up definitions online these days….but I digress).

Now those of you who know me, know that I do NOT have an overly developed sense of the divine. Indeed, in one sermon I gave at my UU church, I said that I was as non-spiritual as MaryBeth was spiritual (this was a sermon on the Humor and Spirituality and if I am not mistaken, I also said that, “I’m not suggesting that MaryBeth is super-religious, but she does have a cape with cross emblazoned upon it that she wears from time to time” — it got a chuckle during the service.) So, while there are several definitions of ‘miracle’ out there, the WordNet definition of, “Any amazing or wonderful occurrence” particularly fits for me today.

Today one of my very dear friends, Luis, came over to build a retaining wall around a tree in my front yard. I was his hired helped (and client, as he told me several times). The wonder in today is that for 6 hours, I forgot I had cancer. I forgot to worry about tomorrow. I forgot that I was anything but a father; a husband; a friend. (Pardon me while my eyes water — as my Wood Badge Scoutmaster would say, “Must be the onions!”) Luis does not and will not let me wallow in self-pity about being sick. He gave me work to do and pushed me until I could not work anymore, and I love him for it. I told him that because my chemo/radiation start was pushed back a week, I was not going to be able to go with my boys to scout camp. Luis told me he would drive me up and back so that I could go to the big campfire program on Thursday.

I feel truly privileged to call Luis my friend and I look forward to continuing that friendship for YEARS to come. I used to say that I had a lot of friends and acquaintances, but there were relatively few people who (I thought) I (could) call in the middle of the night if there were an emergency. I know that Luis is one of a very small group of people on whom I know I can rely. My wish for each of you reading this blog tonight is that you are able to identify at least one person who you could call in the middle of the night and know they will be there for you.

Merle (damn onions!)

Reframing with Serenity

What a difference a (relatively) good night of sleep makes. If one were to consider adverse events on a continuum with ‘Inconvenience’ on the left end and ‘Crisis’ on the right end, last night I would have said the scheduling issues that came up yesterday were certainly close to, if not to the right of, the midpoint (a really BIG inconvenience). Today, I’m more calm and somewhat more relaxed and realize that this is not that big of an inconvenience.

I learned some interesting lessons yesterday. First, long time, ingrained responses to stress often resurface unintentionally. But first, some backstory. I was hit by the Y2K bug, but in a good way. In May 2000, I weighed in excess of 360lbs and in May, 2000 I (finally) decided to do something about it. I went to the Quick Weightloss Center in Atlanta and joined the program. By May, 2001, I had lost 160lbs and, I’m pleased to say, that I have kept the vast majority of that weight off for over 7 years now. Here are some pictures:

Merle before
Merle Before Merle After

Weight loss notwithstanding, though, I learned last night that when I am stressed, I again turn to food for comfort. I am embarrassed to admit to all the unhealthy food I ate yesterday — suffice it to say that I well and truly broke the 2000 calorie diet thing yesterday! :-)

The second important thing I learned yesterday is that Atavan (which my oncologist prescribed if I felt particularly stressed) really does NOT reduce my stress, but knocks me out instead. So last night, I was stressed and sleepy. I think, perhaps, I need to ask the doctor for something a little more effective at the stress thing and less effective at the putting me to sleep thing.

So I am left with the fact that my treatment schedule is mucked up and I have to wait an additional week to begin treatment. Thus, just like a political staffer trying to reframe or ‘spin’ something said by their candidate, I’m going to focus on the benefits of waiting an extra week:

  1. I don’t have to start treatment on my (18th) wedding anniversary; perhaps, instead, my wife and I will do something special for our anniversary.
  2. I won’t be in the midst of treatment on my younger son’s birthday next week; again, perhaps we can do something special.
  3. I have an extra week during which I can enjoy the everyday and not have to worry about nausea and other wonderful gastrointestinal side-effects of the my treatment.
  4. While I cannot fly up to visit my family next Friday (the day I get my port), perhaps I’ll still be able to fly up on Saturday.

I will try to remember the Serenity Prayer as I try to deal with this small setback:

God grant me the serenity to accept the things I cannot change,
the courage to change the things I can,
and wisdom to tell the difference between the two.

As always, thank you for your thoughts, prayers, and support.

Merle

It’s an Inconvenience not a Crisis

I guess sometimes scheduling is more difficult than at other times.  Two weeks ago (5/13), I saw the oncologist and we set tomorrow (5/23) for the date to have my chemo-port installed and next Tuesday (5/27) as my first day of treatment.  Today started out badly, as I had yet to hear from the hospital about what time I should show up for my outpatient procedure, so I called the clinical trial coordinator.  Soon thereafter, I heard from the hospital and I was scheduled to have my port installed at 1:30p.  Unfortunately, that coincided with the time scheduled for my CT scan and Ultrasound (both required procedures to get into the clinical trial).  About 3p this afternoon, I heard back from the clinical trial coordinator…apparently, the radiologists are NOT AVAILABLE next Tuesday.  Sorry!  You’ll have to wait until June 2 to start the clinical trial.

So let’s review:  I declined a visit up to Hopkins because I was going to start treatment next week (and Dr. Cameron at Hopkins couldn’t get me until next week).  Who knows whether he’ll be able to get me in at this point?  Marina had been successful in lining up folks to help with childcare for tomorrow and next week, but as it turns out, we don’t need childcare now.  I had made plans to travel up to the Northeast to visit with my mother, brothers, and sister (and their respective families) so we could get together before I really get into the trial and am less inclined to travel.  Finally, I have been getting increasingly anxious as the beginning of treatment approached.  Now, it seems I have another week to be anxious.  All in all, I have to say I’m really quite angry at this turn of events.

I do not know why this happened, but I suspect user error.  However, as a friend has told me repeatedly over the years, this is an inconvenience, NOT a crisis.  In the end, it is unlikely that there will be any substantial progress in my disease by waiting another week.  Nevertheless, what started out as a generally good day quickly went downhill.  It’s hard to remain positive when having “inconveniences” like this!  :-)

We could never learn to be brave and patient, if there were only joy in the world. – Helen Keller

Thus, I will try to get myself into the mindset that this inconvenience will help me build these qualities.

May your evening be less annoying.

Merle

Wednesday Update

Hello all.  First, I have to apologize for not updating what happened during my radiation ‘simulation.’  The purpose of this simulation was to get a accurate, detailed scan of my tumor and to place marks on my body so I can be positioned in the same exact position for each radiation treatment.  For whatever reason, I was expecting…more.  They put me into the CT scanner, ran several passes, and then pulled me out to place marks on my body.  Now I was not sure what I was expecting…some kind of long term, but temporary tattoo perhaps, but instead, the technician pulled out a sharpie and proceeded to trace plus-signs and lines (projected onto my body via lasers in the ceiling and walls).  As I said, I just expected something more than what my 4-year old daughter does to me with some regularity (drawing on me with sharpies).

At my younger son’s school, the 5th graders parade through the school to applause from students in the lower grades.  Yesterday evening, I found out that some scout leaders and I were recruited to help lead the parade.  Well, the leaders and I got together and spent MINUTES upon MINUTES to plan out what we would do with the 5th graders.  My friend Luis did not want to just walk through the halls, so he thought we should teach the students some cheers.  Well the best laid plans fell apart as we began to walk through the school.  But in the end, the kindergarten through fourth grade students clapped and cheered the 5th graders (with and without a cheer), and after 20 minutes, my son and I were back home relaxing.

Thus, today was a good day; the night…well, my sons and I had a difference of opinion regarding appropriate night time behaviors.  They’re in bed and I’m doing work on my online stats course.

After a string of what I think were pretty reasonable blogs, I find myself at a loss for something of substance today.  Thus, I will leave you with this quote from Dorothy Thompson about courage:

Courage, it would seem, is nothing less than the power to overcome danger, misfortune, fear, injustice, while continuing to affirm inwardly that life with all its sorrows is good; that everything is meaningful even if in a sense beyond our understanding; and that there is always tomorrow.

Merle