I’m Not Dead Yet (I.N.D.Y.)

I have a new feature for the blog; minute by minute reporting of my chemo infusion.  I brought my laptop with me again this week, so I could do some work while at the hospital.   I am currently in chair J1 awaiting my anti-nausea medicine in preparation for my infusion (actually, I am waiting for someone, anyone, to come and acknowledge that I’m sitting here, hopefully signalling that my order has been submitted to the pharmacy.

The appointment with Dr. Kauh went okay.  He and Edie were disappointed that I didn’t come bounding into the room with my abdominal pain completely resolved.  Then again, I’m disappointed by that, too.  The good news, though, is the pain is less than it has been.  I have weened myself off of the oxycodone and the slow-release morphine seems to be doing the job (though, of course, as I typed that, I started getting stabs of pain in my abdomen.

Apparently, my bloodwork looked particularly good, as Dr. Kauh ordered that I could have 100% of the Gemzar dose.  We’ll have to wait and see how I do.  While the pain in my abdomen was (is) inconvenient, there is a benefit to not having had chemo last week: I won’t have chemo NEXT week, thus, possibly messing up my Thanksgiving AND extending out into December, I am also not scheduled to have chemo the week of Christmas.

As for Thanksgiving, my brother told me he should be able to find out next Monday which float I’ll be associated with in the parade.  As soon as I find out, I will let you know.  I really am looking forward to being in the parade, though, getting to spend several days with my family will be great too.

More later,

Merle

Tags: Main, Merle, Treatment by Merle
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The antibiotics don’t seem to be working.  The morphine and oxy do a reasonably good job masking the pain.  I’m going to go hog wild and try to sleep in the bed tonight (rather than sleeping in the healing chair as I have done the last couple of nights).  In answer to the great debate, I did not call the docs at Emory.  I did, however, call the folks at Hopkins and I got through to them.

After describing my symptoms and situation to her, Heather, Dr. Cameron’s physician’s assistant, told me she thought what I was experiencing is adhesions of scar tissue.  That is scar tissue from the incision is adhering to my abdomen muscles.  Presuming she is right, I need to work on stretching out the scar tissue (taking deep breaths, stretching out my abdomen, etc.).  Eventually, the scar tissue will stretch out enough that the pain will go away.  The sharp, twinging pain apparently is caused by muscle spasms.

Heather told me I could get completely off the pain meds I am on now and try to take muscle relaxants.  However, taking the muscle relaxants merely represent another means of combating the pain.  At the moment, I’m leaning toward staying on the pain meds, as we know they work of a sort.  Oh, the tactile pain I described yesterday (and I’m experiencing again today), according to Heather, is a result of the nerve endings in my abdomen regenerating.

I will share this information with the Emory docs and we’ll see what happens.  In the meantime, I will continue to take morphine twice a day and oxycodone as often as needed.  I worked almost an entire day today, so I’ll keep on keepin’ on until I’m told otherwise.

Merle

Tags: Main, Treatment by Merle
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Well, the pain persists.  Apparently, I did too much on Saturday, as I slept (essentially) until noon and spent the afternoon watching football (at least some of which I was doing with my eyes closed).   I was up from 7a-9a with my daughter and I could not remember if I had taken my morphine pill during that time; given my level of discomfort during the day, I would guess that I did not, but who knows.  I have taken some oxy and my evening morphine and we’ll see how I do.  I know that if I feel like I do right now, I will not be going into work tomorrow.

A lot of my discomfort is tactile, meaning it literally hurts to have my shirt rubbing against my lower abdomen.  In addition, as I was driving home from my church Human Sexuality class, there were several times I experiences twinges of pain — sudden stabs of pain that took my breath away.  They disappear as quickly as they start, though.  I’m getting really tired of feeling like this all the time.  I know there are other people in more pain and discomfort than I am experiencing, but perhaps I’m just not as strong as they are (or perhaps, I’m just tired and grumpy — the more likely of the two options).

So to the debate.  I have a doctor’s appointment scheduled for Wednesday.  On Friday, I called to let the docs know that I was still  in pain and discomfort and their response was to take more pain medication as needed.  I do not have a fever; the rash on my abdomen is still smaller than it had been last Wednesday.  I do not believe my case is currently emergent (meaning that I do not believe I need immediate medical care).  So I am not sure what good it will do to call the doctor tomorrow.  If they decided that I needed to be seen, based on previous experience, they wouldn’t be able to get me into the office until Tuesday (the day before my already scheduled appointment).  To me that doesn’t make much sense.  My wife, father, and various and sundry friends, however, think I should call the doctor tomorrow.

I don’t know what I’ll do.  Everyone who has had a Whipple (I spoke to several yesterday) have exclaimed how “amazing” I was for being up and around so quickly after my surgery.  Perhaps this current pain and discomfort is my “payback” for getting over the original surgery so quickly!

Merle

Tags: church, Main, Treatment by Merle
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Well, after two and a half days on the antibiotics and a the IV antibiotics that I had on Wednesday, I can say that the antibiotics do not seem to be working.  The rash is somewhat smaller, but the pain is still present and equal in intensity.  While it’s possible I’m not giving the drugs enough time to do their thing, I would think that by this time, I should have seen some reduction in the pain if the drugs were working.

In the meantime, I continue to manage the pain taking morphine every 12 hours and the oxycodone up to once every three hours (when I called Dr. Kauh’s office yesterday, they told me to continue to monitor the pain, but if I needed to I could increase the frequency with which I took the oxy).

Today I participated in the 2008 PurpleStride Atlanta walk.  There were over 700 participants in the event and it raised over $130,000.  A success all around.  I want to take this time to thank each and everyone one of you who donated in honor of me.  You helped me to raise over $3000 (I was the 4th highest fundraiser).  As with my battle with cancer, I could not have raised this much money without the love and support of each and everyone of you.  I have said it before and I’ll say it again, I am humbled by your generosity — economic, spiritual, and interpersonal.  Below, I am posting pictures from the event.

One of the most touching moments for me, though, was when a woman, Carolyn, came up to me and thanked me for my blog.  She told me her husband had not survived pancreas cancer, and that she pulled some strength from reading about my fight.  I thanked her and then we hugged, for how long, I’m not sure, but once again I felt humbled that this blog brought some joy into people’s lives.

Introducing Team Indy!  Folks from church, karate, and work all showed up to support me.  Thank you Michael, Rebecca, Steve, Jimmy, Patti, Gracie, Kathleen, MaryBeth, and all the kids!

My daughter enjoyed the face painting clown.

My older son enjoying the walk.  I think attending this event perhaps made my having cancer more concrete for him, as he spent a lot of time wanting to hold my hand or walk with our arms around each other.  I was glad to have him there.

What happens when I gave my daughter my camera.  Overall, the reaction to my shirt was generally positive, but there were some people who gave me dirty looks.  I felt very celebrated today.

The starting point of the 5k walk. The runners had already gone off.  There were purple and white balloons all over the place.

Tags: Main, PanCan, The Martial Arts, Treatment by Merle
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To answer the question that may be on everyone’s mind, cellulitis is no diverticulitis.  When I went to the hospital with diverticulitis in October, I was given IV antibiotics and the next day I felt remarkably better having had the medication.  Yesterday, I was given IV antibiotics and I was so hoping that I would wake up this morning feeling remarkably better.  Unfortunately, that did not happen.  In general, I feel about the same as I did yesterday.  Yesterday, Dr. Kauh drew on me with that most sophisticated and technologically advanced medical device — a Sharpie pen — to outline the redness of the rash on my abdomen.  MaryBeth told me that the area of the redness has reduced some, but the area itself still looks inflamed.  Marjorie, my sister, the muckity-much nurse manager at CHOP in Philly, told me that I should call Dr. Kauh back if things were not markedly better tomorrow. (My Mom made me promise that I would follow my sister’s instructions — my goodness I’m getting bullied today.)  Oh yeah, and the folks from Hopkins still have not gotten back to me; I’ll continue to call, but at some point persistence becomes annoyance.

This morning, as I was laying out my medications to start the day, I thought about taking a picture and showing folks what it is I take everyone morning.  Now let me say that I realize that there are other people out there who take more medications than I, but I was still struck by the sheer number of them today, so I thought I’d share my little ritual.

I take the Welbutrin to help deal with the day to day stress and emotions I have been dealing with over the last several months (2 pills, once a day).  The antibiotic is helping me to fight the cellulitis and is relatively short-lived (1 pill, 4 times a day for a 10 day cycle).  Because of the damage to my pancreas caused by the cancer (remember they removed the head of my pancreas), I need to take pancreatic enzymes with each and every meal and even some snacks (2 pills at every meal, 1 pill for snacks, every day — if I don’t take these enzymes, I don’t digest the food properly, particularly the fat and oil, which makes for — um — an interesting time the bathroom).  The morphine was prescribed to help me deal with the pain from the cellulitis (1 pill, twice a day).   Essentially, if the morphine takes the edge of the cellulitis pain, the oxycodone is used for break-through pain (1-2 pills as needed).  I take protonix to help with gastroecophogeal reflux associated with all the other medications I am taking and the way my GI tract is working these days (1 pill, once a day).  Finally, and at the risk of sounding indelicate, one of the side-effects of taking all the narcotics is constipation; the colase is supposed to help get things moving (2 pills, twice a day).

In addition to the medications above, I have also been known to take ambien (1 pill, as needed) to help me sleep; ativan (1 pill as needed) for breakthrough anxiety; and compazine and / or zofran for nausea as needed.  I’m a veritable pharmacy.  Of course, if my medical bills ever get too high, I have the beginnings of a very lucrative black market drug business.  (For any law enforcement officials or their agents that may be reading this blog, please note that the last sentence is an example of the literary technique of humor — I have no intention of sell any of my drugs — of course, I have condiered putting one of my children on Ebay if things ever get really dicey.)

I have said the last couple of days that I would love to have Dr. House on my case.  First, I can appreciate his sense of humor, and second, he always (eventually) figures out what is wrong with his patient.   Right now I feel like I need a good diagnostician, and while Dr. Kauh seems to be a good oncologist, he seems at a loss to explain what’s going on with me if my condition is not cellulitis.  At the very least, if Dr. House were here, he’d have my case figured out within 42 minutes (the actual length of time an hour long television drama is actually playing).  Interestingly, House is on as I type this.  The storyline has to do with a faith-healer who is having some medical problem and Dr. House is dealing with having to help his patient while also expressing his disdain for all things faith-based.  A secondary storyline has to do with another patient who has terminal cancer and how, seemingly through faith, her tumor shrinks.  (Of course, by the end of the show, Dr. House was able to medically explain how the faith healer was able to help the cancer patient’s tumor shrink.)

While in Puerto Rico, I spent some time chatting with the Rev. Debra Haffner about my cancer (she’s a Unitarian Universalist minister who also is a sex educator, which explains why she was at my “sex conference”).  At one point during our conversations, Rev. Haffner mentioned that she was thinking about asking me to pray with her about my illness.  I have to say I’m glad she didn’t.  I might have mentioned that I am not a very spiritual person.  I maintain a positive attitude as best I can, but I do not put much stock in the power of prayer.  I understand that many people find comfort in prayer, but I have not yet found it helpful to me.  Having said that, I really do so appreciate that so many people who believe in the power of prayer are doing so for me.   At a meeting tonight, I was stopped no less than 5 times by people who asked about how I was doing and who told me they and their families are praying for me.  To them and to those of you who have been with me from the beginning of this journey and those of you who have joined me along the way, Thank you for your love, support, and caring.

One last thing, you people have been amazing in terms of coming through to help get me to my fundraising goals.  I am just $172.80 away from making my goal of $3000.  I hate to sound like a broken record, but I would really love to get that last little bit, so please consider going to my PurpleStride page and consider contributing.  You all are the bomb!

Merle

Tags: church, Main, Merle, PanCan, Theology/Philosophy, Treatment by Merle
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I went to the doctor today and spent 4 1/2 hours at the hospital.  I cannot begin to describe how much I deplore spending that much time at the hospital (though, I guess 4 1/2 hours is preferable to allowing the problem to “fester” and end up being admitted to the hospital, yes?).  Initially, Edie, Dr. Kauh’s physician’s assistant, met with MaryBeth and me and again reiterated that the scans and tests that were run last week did not show anything.  We discussed plans to manage the discomfort and waiting to see what other symptoms might arise.  I pointed out, though, that I would really like to work towards understanding what was causing the problem.  So Edie went to get Dr. Kauh.

Dr. Kauh and Edie returned and proceeded to poke and prod me and continued to be confused by my presentation.  My bloodwork from today was fine (in fact, today, my white blood cell counts today were in the normal range — everyone do a happy dance!!  We won’t mention my red blood cell count, though).  Dr. Kauh then consulted with a surgeon who came in to examine my abdomen and together they came to an agreement.

The new word for the day, boys and girls, is “cellulitis.”  The discussion today was that the cellulitis, which is a bacteriologic infection — most commonly caused by streptococcal and staphylococcal infections.  As a result, Dr. Kauh suspended my chemo for this week and, instead, gave me IV antibiotics.  Tomorrow, I will start on a 10-day cycle of oral antibiotics.  My chemo was rescheduled for next week — the upside to this is that I will likely NOT have chemo the week after, so I won’t have to worry about dealing with chemo side effects while trying to enjoy Thanksgiving with my family.

The good news is that Dr. Kauh felt that if I do, in fact, have cellulitis, then we should start seeing an effect of the antibiotics within the next 24-48 hours.  In the meantime, we will continue to manage the pain with slow-release morphine and oxycodone.  Here’s hoping…

Speaking of Thanksgiving, I found out that I am going to be in the Pirate Planksters clown group in the Macy’s Thanksgiving Day parade.  I am going to see what I can do to set it up so that I can call someone when I know what floats I’ll be near, and they can post it on the blog.  I’m really looking forward to being in the Macy’s Day Parade, but more, I’m looking forward to spending an extended weekend with my Mom, brothers and sister (and their respective families).

I have to say that the holiday season seems more important this year than last.  Last year, we were dealing with this persistent bile duct blockage, which, after a while, just seemed to be a benign inconvenience.  With the onset of this years season, life seems more precious (for obvious reasons).   Tim Hansel once said: “Life becomes precious and more special to us when we look for the little everyday miracles and get excited about the privileges of simply being…”.  While I was in Puerto Rico, everytime someone said, “Good to see you,”  I would respond, “Good to be seen.”  Truly I was enjoying the privilege of being…

As I have mentioned previously, this is the last week before the Atlanta Purple Stride event.  If you have been waiting for the right time, now would be that time.  Please head on over to my Purple Stride webpage and make that donation you’ve been thinking about.  We, together, have raised a little over $2400.  Help me make it to $3,000.

More tomorrow!

Merle

Tags: Cancer News, Main, Merle, PanCan, Theology/Philosophy, Treatment by Merle
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As I said in a previous post, my oncologist wanted to start me on a slow release morphine based drug, MS Contin.  I have had 3 doses so far and whether it’s a placebo effect or not, I feel like the pain is somewhat better moderated.  Unlike other people, oxycodone (and other similar narcotics) do not seem to give me a “high.”  If I have enough doses, I get sleepy, but never really “high.”  When I was using oxycodone to manage the pain after the surgery and more recently with this new pain in my abdomen, the medicine would take the “edge” off the pain, and then make me not care about the remaining pain.  This new morphine based medicine seems to do a better job of taking the edge off (I still use the oxycodone for “breakthrough” pain).

So, at this point in time, the pain is more tolerable.

Today I met with Dr. Landry, my radiologist.  As my oncologist did last week, Dr. Landry check me over this afternoon, focusing on the pain in my abdomen.  It seems as if there is a little swelling in the area associated with the pain and a little bit of redness.  Dr. Landry did not have any ideas off the top of his head, but he was going to talk with Dr. Kauh about my situation.  One thing Dr. Landry did suggest was the possibility of having an appointment with Dr. Sarmiento.  For those of you (relatively) new to the blog, Dr. Sarmiento was the surgeon here in Atlanta with whom I had been working.  Dr. Landry thought it might be worth while to have a surgeon’s opinion about my situation.

Where does this leave me?  Well, I have several different doctors who have looked at the tests that have been run and feel certain that the pain in my abdomen is not associated with my liver, my spleen, a blockage in my intestines, or unexplained fluid leaking into my abdomen.  That is, they agreed one what my problem is NOT.  I am expecting (hoping) that my appointment with Dr. Kauh tomorrow will focus not only on whether I can have my biweekly chemo tomorrow, but also to try and better understand the cause of my pain.

On a happier note, this evening, my family and I are going to the musical concert of my younger son (he plays the base violin in the middle school orchestra).  I’m really looking forward to this concert.  He really enjoys his music and is excited about being in the concert.   If you’ll recall, I got really upset last year when I went to his final elementary school concert (I spent a lot of time thinking about the future and how I may not be around to see future concerts).  Whether it’s the medicine that I’m taking (Welbutrin) or just my having come to grips with my condition (or a combination of the two), I don’t feel as if I am going to have the same reaction.  I am planning to enjoy the concert with my family and celebratin my younger son’s accomplishment.

We are in the last week before the Pancreatic Cancer Action Network’s PurpleStride Atlanta walk.  I appreciate all the donations I have received thus far.  In fact, I have once again increased my fund-raising goal to $3,000.  This week I will be making one last push to raise this money.  If you would consider doing so, please click over to my personal PurpleStride webpage to make a donation.  Finally, I want to make sure that everyone knows that if you are in the Atlanta area, you are welcomed to come join my family and I to walk or run in the event.

I’ll have more to say about my abdomen pain after my appointment tomorrow.  Thank you for checking in with me.

Merle

Tags: Family, Main, PanCan, Treatment by Merle
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Well, I am at the end of my Puerto Rico excursion and, incredibly, I am wondering whether I made the right decision to attend the conference. Do not get me wrong: I loved being able get together with and collaborate with friends such as Pete, Kathy, Mark, and Debra. I really enjoy sitting around with them and discussing debating various topics of contention (and of course, when sitting around includes in chaise lounge chairs overlooking the Atlantic ocean, sipping on fruity rum drinks, well all the better).

Unfortunately, however, I spent the vast majority of this weekend uncomfortable, when things were good (e.g., when I first woke up), and in pain when things were not (e.g., at the end of the day). As I said earlier, I have been more aware of being sick these past 8 or 9 days than anytime since my operation.

I returned to Atlanta this evening (after almost 9 hours of traveling). Atlanta is much colder than San Juan and I learned something on my walk to the car: shivering uses a lot of the stomach muscles. OMG, if I was uncomfortable carrying my suitcase and my computer and camera bags, I was close to tears when I was outside walking to the car.

I am going to call Dr. Kauh’s office tomorrow to see if we could start me on the new pain medication, as well as touch in with the folks at Hopkins to see if they have any ideas. I am planning on taking tomorrow off (or at least working a reduced schedule from home). This past weekend, I was going from early in the morning until the middle of the evening. Of course, there was some down time during the day, but I did not (foolishly) take rests / naps during the days. I think I will do well to have a low key day where I let my body readjust.

All in all, this weekend was not what I had in mind when i thought about my trip to San Juan.  Well, next year the conference is in Porta Vallarta, Mexico; hopefully, I’ll be feeling better by then. 

Next Saturday is the PANCAN Purple Stride 5k walk/run.  As always, i want to thank those who have already contributed to my fundraising efforts.  I was hoping that I might be able to convince some of you who have not yet donated to do so.  So, if you have been on the wall about possibly donating, consider this an electronic push.  Go to my personal PurpleStride page and help me reach my $2000 goal.  Thank you in advance for your support.

Merle

Tags: Main, PanCan, Treatment, Work by Merle
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I continue to attend my conference in San Juan, PR over the last several days, but instead of enjoying my Caribbean “working vacation” I have spent much of the last 2 days not feeling well.  As I have said previously, pancreas cancer is generally asymptomatic, yet this unexplained pain in my abdomen has done what all the various doctor’s visits and medical tests have failed to do: Remind me that I have cancer.  Waking up with pain, having to regularly ingest pain medication to reduce the discomfort enough that I can attend the actual conference presentations; having to move slowly so I don’t bump or jostle my innards.

I have been more aware of my cancer in the last week than I had been since just after my surgery.  The last couple of days, I have just felt sick.  My colleagues here at the conference that know about my condition continue to be worried when they see me amble into the presentations (not to mention my wife worrying about my potential need to access the health care system while I’m in PR).  In fact, MaryBeth can rest easy when I say that Kathy, a colleague whom I met over 2  years ago and have subsequently developed a very strong friendship, has been on a “Merle you need to take care of yourself” kick (and though I grouse when she pesters me to eat, for example, I really do appreciate that she and others care enough to pester and hound me).

Early in my illness, I used to categorize my days as either good days or bad days.  At that time, a good day was one in which I was not consumed with thoughts of my recently diagnosed cancer; a bad day was one in which the “what ifs” associated with my cancer took over my conscious thoughts.  Unfortunately, the last couple of days also fit into the “bad day” category.  One of the “benefits” of having pancreas cancer is that it’s generally asymptomatic until the disease had substantially progressed and developed.

Despite that the diagnostic information (e.g., x-rays, CT scans, blood work)  already collected by my docs seems to indicate that this currently unexplained pain is NOT obviously associated with my pancreas cancer. Nevertheless, the pain and discomfort is very real and runs along (and to the right) of my surgical incision.  So, being someone who tends to worry, I remain concerned about this currently unexplained pain.

This may sound morbid and to be clear I do NOT have a death wish, but there is a piece of me that wishes that a tumor would be found and the doctors could tell me you have x-number of months of good health left.  Again, I want to put off my death for as long as i can.  (Amusing side note: Lisa, a friend from church, told me about a conversation she had had with a colleague in which the colleague had said something like, “If I’m going to die….”  Lisa broke into laughter, as she is apt to do when people say silly things, and responded, “Do you know something I don’t?” All this to say that we are ALL going to die, so it’s just kinda silly to make a statement about “IF” I’m going to die…Okay, perhaps it loses something in the translation, but I found it amusing.)

I don’t like not knowing what’s going to happen.  Am I part of that fringe group that will make it to 5 years?  (My friend Anna has specifically told me that I AM the fringe, so she has no doubt that I’ll beat this disease.)  As best as I can tell, I am going to continue with and complete my current chemo treatment regimen, and then wait to see whether the cancer comes back.  Dr. Kauh said something along the lines of “We’ll finish your treatment and then cross our fingers.”  As I have said previously, I am Type A enough that I will likely experience increased anxiety as we “wait and see.”  Being told an endpoint would, at least, allow me to come to grips with that eventuality and get my affairs in order.  There would be stress (to be sure) associated with being given that kind of endpoint information, at least it would give me a timeline within which to work — I often work better when their is (pardon the pun) a deadline.

Let me say, though, that it is easy to be glib about this situation (being given a limited amount of time of good health left), because I’m not expecting it to happen anytime soon.  I think I would be significantly less glib if I were to go to my doctor’s appointment next Wednesday and was given that kind of information.  I guess I’m trying to say that it’s easier to be “brave” in the face of cancer, when you don’t expect that you’re likely to get such information.

So this turned out to be more rambling than I intended.  To sum up: (a) I’m in PR trying to have fun while attending a professional conference; (b) i have fairly intense pain (when not treated with appropriate medication) that has impacted my SJQOL (San Juan Quality of Life); and (c) being in this situation has led me to be a bit maudlin in my cognitive musings.  Maybe tomorrow I can write something that is light and fluffy! 

Until then…

Merle

Tags: Main, Theology/Philosophy, Treatment, Work by Merle
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Just a quick update.  I made it to Puerto Rico safely.  The pain in my tummy was generally held in check through a combination of pain medications and adult beverages (though, I was careful to minimize the mixing of the two).  Despite not having chemo for over a week, I was surprised when i crashed pretty hard last night.  Given the generally low impact on my life the pancreas cancer has from day to day, I just find it hard to acknowledge that I’m less “hearty” than I used to be.  I just find it interesting how much traveling “takes it out of me.”  You would think that it would not be so draining to just sit on a plane for 3 1/2 hours.

What can I say?  I am not in denial of having cancer, but I hate having to acknowledge that I don’t have the fortitude to be able to deal with some of the physical (and emotional) limits it imposes on me.  I recognize the irrationality of the following statement, but:  I should be able to be strong enough to deal with these physical / emotional issues.

Irrationality notwithstanding, I am hoping the conference will be enjoyable and fulfilling.  More later!

Merle

Tags: Main, Theology/Philosophy, Treatment by Merle
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