I’m Not Dead Yet (I.N.D.Y.)

I spoke with Dr. Cameron this afternoon.  He remains a pompous ass (much like many surgeons), but he is a pompous ass who has completed more Whipple Procedures than any other surgeon in the world (at least according to him).  After reviewing the 3D CT scans, Dr. Cameron said I was a candidate for surgery and he gives it a 50/50 chance of success (meaning getting all of the tumor).

So that is good news.  Now both surgeons are in agreement about treatment and the decision is where to have the procedure.  As I did with Dr. Sarmiento, I will make an appointment for surgery with Dr. Cameron tomorrow morning.  I then have to check with my insurance about issues surrounding having the surgery in Baltimore and follow-up care in Atlanta.  Also, I have an appointment with my oncologist, Dr. Kauh, on Monday to discuss options.

I have some pretty big decisions to make over the next couple of days; ones that quite literally can affect the rest of my life and the lives of my family.  This whole getting older and being a grown-up sucks sometimes.

Merle

Tags: Main, Theology/Philosophy, Treatment by Merle
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I wish I could sit here and tell you that I had a great visit to Baltimore, and in one way, it was a great visit.  MaryBeth and I spent Tuesday tooling around the Inner Harbor with my brother Isaac and my Mom.  We ate wonderful crabcake sandwiches at a really great harborside restaurant and in the evening, my brother Sid joined us and we went to Bo Brooks for some steamed crabs.  It was a long day with the traveling and what not, but I enjoyed having a great time with my family.

…and then there was today.

Before I get to the events of today, though, I want to fill you in on the back story of this trip.  Back in May, I had sent Dr. Cameron all of the written notes and CDs with all of my scans and imaging on it.  After reviewing these materials, Dr. Cameron had requested that I get a 3D CT scan; however, it was not possible to get up to Johns Hopkins to get the scan before I began treatment in the clinical trial.

Last Thursday I had my follow-up CT scan here in Atlanta and, upon receipt of the CD, I rushed over to FedEx to overnight express the CDs with my pre-treatment and post-treatment imaging on them to Dr. Cameron.  Originally, Dr. Cameron’s administrative assistant had said that if the doctor wanted additional imaging, I could get that done BEFORE my appointment today.  When I called his office yesterday, Dr. Cameron’s assistant informed me that Dr. Cameron had not even looked at the CDs I had sent yet.  When I reminded her that she had suggested that we could get additional imaging, if needed, this morning, she said she would get the CDs to Dr. Cameron yesterday.

Well, suffice it to say that I don’t think Dr. Cameron tried to look at the imaging  until just before my appointment.  He walked into the room and informed me that they could not open the images I sent him.  He then ordered a 3D CT scan (which I got this afternoon).  If Dr. Cameron HAD tried to look at the imaging I sent him, I could have had the 3D scan this morning and he would have at least been able to look at the cross sectional images before my appointment (the 3D imaging takes a while to be rendered). I’m supposed to call him tomorrow after 2p to get his opinion about my surgical candidacy based on the images taken today.

I did show him the Emory report from my post-treatment CT scan and after a quick read, Dr. Cameron said that he could not recommend surgery because according to his read of the report (which, admittedly, was quick while the bunch of us waited for him to finish) the mesenteric arteries were completely surrounded by the tumor.  I was dumbfounded.  That was absolutely not what I was expecting to hear.  Of course, Dr. Cameron said he could not make any definitive statements until he saw the 3D CT.  He did say that he would NOT operate unless he thought there was a 30% chance I would benefit from the surgery.

Thoughts about the visit: I was disappointed that Dr. Cameron did not look at the materials I sent him last week until today.  Both MaryBeth and I left with the feeling that Dr. Cameron was not necessarily invested in my treatment.  I understand that he has lots of patients and that I am one in many, but I am not concerned about the others and I felt like he was not particularly concerned about my treatment.  Dr. Cameron’s read of the the report was that the mesenteric arteries were completely encased by the tumor, whereas my oncologist and surgeon here in Atlanta, said that the tumor was “kissing” up against the arteries.  Perhaps he just misread or misinterpreted the report, but I have to say that I was really upset when he told me he did not think I was a surgical candidate.

Given that Dr. Cameron was commenting on the report while my Atlanta surgeon had reviewed the actual images, I’m hoping that Dr. Cameron misread the report and that the 3D CT scan shows that the tumor is, in fact, only tangentially involved with the tumor.  Here’s hoping.

Other things that Dr. Cameron did that put me off include: (a) saying that he wished he had seen me back last August because when he sees unexplained billiary strictures, he immediately thinks ‘cancer.’  Besides being a useless statement, Dr. Cameron implicitly suggested that I had bad medical advice since August ’07 and that had I only come to him in the beginning, all would be better.  In my opinion, Dr. Kulkarni did a great job investigating what may be the cause of my problems (as I have outlined in previous posts).  I do not think it’s useful to tell a patient that he made a mistake not coming to him sooner.  (b) When I told Dr. Cameron that Dr. Sarmiento was my surgeon in Atlanta, he responded that he didn’t know Sarmiento and he “thought he knew everyone doing this kind of surgery.”  Again, the implicit message is that Dr. Sarmiento is not good enough because Dr. Cameron didn’t know about him.  Again, this is a useless comment.  (Interestingly, when MaryBeth pointed out that we had requested the possibility of having imaging done this morning, Dr. Cameron said that it was just “..water under the bridge.”  As if to say, we may have screwed up by not looking at your stuff sooner, but there’s nothing to do about it now.”)  Nevertheless, Dr. Cameron was willing to make similar useless comments about my medical treatment to date.

Dr. Sarmiento encouraged me to go into my meeting with Dr. Cameron with an open mind and to decide who I felt most comfortable with.  Right now, I feel like Dr. Sarmiento, who is perhaps overly optimistic about my surgery, is willing to be more aggressive, and does not have as much experience as Dr. Cameron, at least seems more invested in me and my health.  We’ll see what Dr. Cameron says tomorrow, but if I had to make a decision right now, I would go with Dr. Sarmiento every day of the week and twice on Sundays.

In the end, the news is that there is no news….today.  Besides the good time with my family, I really feel as if this trip was a waste of time and money.  I’ll hopefully have more to say about this tomorrow.

Merle

Tags: Family, Main, Treatment by Merle
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Well, today’s appointment with Dr. Sarmiento did not quite go the way MaryBeth and I would have preferred. According to the CT scan, there was no appreciable change in the size of the tumor or any of the other things assessed by the CT (meaning that there is STILL no evidence of metastasis nor is there evidence that the cancer cells have invaded the lymphatic system). While the latter of these is good, we were very much hoping the size of the tumor would have decreased and, in particular, lead to a disentanglement of the tumor with the portal vein and the mesenteric arteries. Unfortunately, the portal vein is still surrounded (about 180 degrees) by the tumor and, in the words of Dr. Sarmiento, the tumor is “kissing” up against the arteries.

After all is said and done, though, Dr. Sarmiento believes it makes sense, given my age, to go ahead with the surgery, because it is the best bet I have for beating this cancer. To refresh your memories, Dr. Sarmiento will perform a ‘Whipple Procedure.” During this procedure, the surgeon will remove: (a) the head of my pancreas; (b) my bile duct (no more ERCPs — YEAH); (c) about 18 inches of small intestine (including the duodenum); and (d) about 40% of my stomach. I should be in the hospital for 7-10 days (though, it could be longer) and then at home on bed rest for another 2-3 weeks.

My preference right now is to have the surgery here, as it would be incredibly inconvenient to have it up in Baltimore; however, I am going into my meeting with Dr. Cameron with an open mind and will wait to hear what he says.

I’d be lying if I said I was not stressed about the results today. I really (REALLY) would have liked the doctor to have said, “Your tumor is MUCH smaller and surgery will be a breeze.” Instead, he talked about the increased risk associated with the fact that the tumor is still all mixed up with blood vessels in my abdomen.

One potentially positive note is that the CT was unable to determine which tumor tissue was dead (from the chemo and radiation) and which tissue was still alive. Dead tissue is MUCH easier to resect than live tissue, so perhaps tissue around the veins and arteries will be dead!

I’m on the road tomorrow to Baltimore. My older brother, Isaac, is taking tomorrow off to hang with MB, my Mom, and I in Baltimore and then Diney is coming down to have dinner with us and then go with me, Mom, and MB to the doctor’s on Wednesday. I am very lucky to have such a supportive family.

Merle

Tags: Family, Main, Treatment by Merle
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This weekend has been very nice, as my father and step mother were visiting.  My father still requires oxygen to help him breath (unless his portable oxygen tank stops working — then he can get by without it).   He was in good spirits, but it was hard this morning listening to him trying to catch his breath after walking from the restaurant to the car.  I would have felt better if the regulator on his oxygen tank worked.  Of course, my step mother really enjoyed spending time with the kids (swimming with the kids, reading stories to my daughter, playing badminton and throwing the Frisbee with my younger son, and just talking with my older son).

For those of you who haven’t seen my father, here’s a picture of my Dad and me outside my house.  Alternatively, MaryBeth also took a picture of my Dad and me inside; notice that we are both pretty damn cool looking with our sunglasses and our hats.  (My hat is a ‘chemo cap’ knitted for me by a friend of mine – Karen Duktig.  In fact, Karen knitted several caps which I modeled at TumorPalooza — pictures of which are forthcoming shortly.)

As for the reminder, after breakfast this morning, I began feeling nauseous.  The nausea continued to get worse throughout the day, reminding me that even though I may no longer have toxic chemicals coursing through my bloodstream, I still have cancer and certain foods just don’t agree with me.  My stomach settled down after a dose of compazine and a couple of Bitters & Coke (and no food since 11a).

At the suggestion of several friends, MaryBeth and I got a babysitter and went out in an attempt to enjoy ourselves before stress levels (potentially) increase with the onslaught of upcoming doctor’s visits.  If you haven’t seen it yet, I highly recommend “The Dark Knight!”  As best as I can tell, it is an accurate representation of the original “feel” of the “Batman” comic books.  While certainly dark, the movie was entertaining.

Tomorrow is the big day.  All prayers, positive energy, and other invocations of higher powers accepted.  Here’s hoping that we get good news tomorrow.

Merle

Tags: Family, Main, Treatment by Merle
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Just a quick update today.  I would have posted this yesterday, but didn’t want to take away from the memory of Dr. Pausch.  My CT scan went well, I guess (I won’t know anything until Monday morning).  I conveniently forgot, however, what a joy it was to drink 40oz of barium.  I’m not sure which is worse, the banana flavored barium or the lemon-lime flavored stuff they made me drink last time.  Either way, I don’t think I’ll be having any banana smoothies in the near future.  Bleah!

Dr. Pausch’s death has once again brought me face to face with my mortality.  While I know that I am different from Dr. Pausch, the reality is that his situation is very similar to mine.  His death is simply a reminder that if I become a candidate for surgery, the procedure itself is NOT the end point of this journey. Instead, it becomes merely another (albeit significant) stop along the way.

Hope you are having a great weekend.

Merle

Tags: Idolatry, Main, Theology/Philosophy, Treatment by Merle
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I am sad to write that Dr. Randy Pausch passed away today (July 25, 2008) due to complications to his pancreas cancer. As many of you know, Dr. Pausch’s battle with cancer has been a source of inspiration to me. I wish I had had the opportunity to meet or talk with Dr. Pausch; to have experienced first hand his zeal life.

Dr. Pausch, in many ways, beat the odds of this pernicious form of cancer. Most people diagnosed with pancreas cancer are not eligible for surgery; Dr. Pausch was able to get the Whipple procedure (something only 20% of patients with pancreas cancer are able to do). Unfortunately, they found out later that the cancer had metastisized. He continued to fight the disease, seeking out various chemo and radiation therapies (some of which were particularly toxic). In August of 2007, Dr. Pausch was given 3-6 months of “good health” left. In September, 2007, Dr. Pausch delivered his “Last Lecture.” In the end, Dr. Pausch defied the doctor’s predictions living almost 11 months.

I have already been contacted by friends who were concerned that I would be terribly upset by this news. While I am saddened by Dr. Pausch’s passing, it was not unexpected. I had chatted with friends who had noticed, as had I, that Dr. Pausch had not updated his blog in almost a month. I had, in fact, searched for news of his passing just last week.

I was reminded today of two very important facts: (a) The ending to Dr. Pausch’s battle is NOT (necessarily) predictive of my outcome; and (b) The odds of me beating this disease remain ’0′ or ’1′.

I can only hope that whatever news I get next Monday, I can live my life as fully as Dr. Pausch did these past 2 years. He did not hide from his illness, but used as a motivation to embrace his life and squeeze out every last moment of the time he had left. Rest in peace, Dr. Pausch.

Merle

Tags: Cancer News, Family, Idolatry, Main, Miscellaneous, Theology/Philosophy by Merle
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Well, by mid-day today, my throat was no longer sore, though my mouth remains sore.  After teaching a karate class tonight, MaryBeth says it sounds as if I’ve lost my voice. I like to think that my voice simply sounds more husky.

Other than the soreness and lack of voice, though, I’m doing okay.  I have to say that these last couple of weeks have been harder than I had expected.  Up until the end of my neoadjuvant treatment, I at least had SOMETHING to do.  The waiting…the not knowing what has happened or what will happen, has been particularly difficult on both me and my family.  At least, tomorrow I’ll have my CT scan and the doctors will know something…I’ll have to wait until Monday.

In the meanwhile, the last planned visit from family starts on Friday when my father and step-mother come for the weekend.  My father continues to be  a source of inspiration.   Having had a portion of the right lobe of his lung removed to battle his lung cancer a little less than three months ago, my father, this weekend, was back volunteering at The Mote in Sarasota.  I’ve said it before and I’ll say it again, I hope my recovery from my surgery will be as good.

Merle

Tags: Family, Main, The Martial Arts, Theology/Philosophy, Treatment by Merle
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Well, as I am home and recovering, I presume that the ERCP was a success.  Unfortunately, MaryBeth was off taking her sister, Cat, and her husband, Stan, to the airport when the doctor finished up.  He had left by the time I was awake and MB got back, so I’m not sure what he found about the flow through the bile duct.

Right now I’m tired and my throat is sore, which is to be expected given they had to intubate me (give me a breathing tube) because they used general anesthesia on me and THEN put the endoscope down my esophagus.  I’ll take it easy tomorrow, working from home, and I should be good to go for my CT-scan on Thursday.

What does it say when I walked into the Day Surgery section of Gwinnett Medical and the nurse greeter called me by name and suggested that she was going to get me a ‘Frequent Patient’ pass??    Hopefully, though, this will be my last ERCP.  Don’t get me wrong, Dr. Kulkarni has been great.  He has taken great care of me, but it is my sincere hope that the tumor has shrunk enough so that surgery is possible.  Presuming that is the case, the tumor will be removed, along with the bile duct, possibly part of the stomach, and likely part of the small intestine.  (If there is no bile duct, then I will not need another ERCP.)

As much as I am hoping that I become a candidate for surgery, I also spent some time today thinking about the complexity of the Whipple Procedure.  Up until last year, I had never really had ANY surgery.  Then I had rotator cuff surgery in February, 2007; gall bladder removal in August, 2007; and 6 ERCPs (which, I guess is not technically surgery, but close enough in my book).  But all of those experiences PALE in comparison to the invasive nature of the Whipple.  Up until now, I haven’t had to really think about the surgery, as it was always something that would happen down the line.  Now it’s (seemingly) staring me in the face.

I’m trying to stay present and not worry about it too much.  I’ll know more after next week, but still it’s odd to be hoping to undergo the surgery.  I know the Whipple is my best chance of surviving this cancer, but I’m not relishing the idea of staying in the hospital for a week or two (at best — and possibly longer).

Perhaps I’ll just worry about that later, eh?  Thanks for checking in on me.

Merle

Tags: Main, Treatment by Merle
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So I got up today to go work out; 5:30a came very early!  I made it to the gym and did the first half of my workout (weights), but I did not have the energy to do my cardio.  I was so bummed.  It’s funny how a perfectly good day can be “ruined” by something as silly as not having a good workout.

At the party, several people asked what comes next, so here’s what’s on my medical plate for the next couple of weeks:

• Tomorrow (well, today, actually — 7/22) I am having an ERCP to replace the stent that is currently in my bile duct.  As a potential test of whether my tumor has shrunk any, I’m going to ask the gastroenterologist (Dr. Kulkarni) if he will see if there is any flow when he takes the stent out.  Essentially, before chemo/radiation the tumor was pushing against the bile duct preventing flow; if the tumor has shrunk, perhaps there will be flow when the stent is removed (though, he’ll still put a new stent in).
• Thursday (7/24) I have my re-staging CT at Emory.  I’ll get a copy of the CD with the images, but I will not get the report from the scan until next week.  (This is code for: “I won’t know anything about my scan until Monday 7/28, so don’t ask!”).
• Monday (7/28) I meet with the Atlanta-based surgeon (Dr. Sarmiento).  Dr. Sarmeinto was very positive about my prognosis for surgery back in April; hopefully, my tumor behaved itself.
• Tuesday (7/29), MaryBeth and I fly to Baltimore.  My mother will be meeting us there and hopefully we can get together with my brother, Isaac, for dinner.  Either way, we will be staying near Baltimore’s Inner Harbor, so I’m hoping we’ll have time to visit around there.  (As an aside, the docs at Emory will discuss my tumor at their Tumor Board on Tuesday, too.)
• Wednesday (7/30), I have an appointment with Dr. Cameron, the surgeon from Johns Hopkins, for a surgical consult / 2nd opinion.
• Monday (8/4), I meet with Dr. Kauh, my oncologist in Atlanta, to discuss what the surgeon’s said and to make a plan for my treatment.

Beyond 8/4, I have no idea what August might hold.  I have a conference to go in the middle of August which I would like to make if possible, but that will depend on what the doctors say.  I do know that if I have the surgery up in Baltimore, it will likely not happen until after Labor Day, as Dr. Cameron is out of the office on vacation the 2nd half of August.  In deference to the folks at Hopkins, though, I really (REALLY) hope I can have the surgery down here in Atlanta.  It would be SOOOO much more convenient.  We shall see!

Merle

Tags: Main, Treatment, Work by Merle
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The party last night was fabulous.  I could not have imagined a more festive time with family and friends.  People ate and laughed and there was only limited talk about my cancer.  In retrospect, I should have made a speech and brought everyone up to speed on what happens next, but you know what, if that’s the only problem with last night, I’m doing well.  Unfortunately, an apparently bigger challenge for the evening was the adult beverage debacle.

The adapter for the 1/4 keg of Sam Adams beer I purchased didn’t seal properly and would not actually dispense the beer.  Apparently several party guests spent quite a bit of time around the keg trying to get the tap to work to no avail (there was some suggestion that someone should have videotaped the work, as it was quite amusing watching the people fight to try and get beer out of the keg).  In the end, MB returned the keg and adapter during the party and did get some other adult beverages and the party survived.

Beer and parking notwithstanding, I felt wonderfully celebrated last night.  People came to support me and party with me and were successful on both counts.  (Though, even when people commented on how many people were there showing support, I tended to make a snarky comment along the lines of: “Well, if you feed them, they will come…”).   Nevertheless, I was overwhelmed by the response, I am inundated with leftover food, and am looking forward to TumorPalooza II when I am on the otherside of, and recovered from, my surgery.

Now before you kvetch, pictures are forthcoming.  The official photographer of TumorPalooza has promised to take all the pictures (many of which are incriminating) and post them to an online gallery.  I will post some favorites here, but I hereby promise to make available all pictures which the photographer puts into a web gallery (humiliation be damned — particularly the “chemo hat” images).

Again, thank you to all that helped setup; to all that cleaned up (including threatening MB and myself with bodily harm should we spend too much time cleaning up); and to my friends and family who were there (including those who could not be there in body, but were there in spirit).  I truly hope you all had as good a time as I.  I thank you for showing me (and continuing to show me) love and support.

Merle

Tags: church, Family, Main, Merle by Merle
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