I’m Not Dead Yet (I.N.D.Y.)

Merle is awake and cogent this morning.  The ventilator tube is out now, so he can talk, but he is still VERY sore and tired.  The nurses said at some point today he has to get up and sit in a chair.  (Sounds painful!)  He may be spared walking laps until tomorrow, however. He is currently still on the ICU but will likely be moved to a regular floor sometime today.  WE are hoping he will get into the Marburg wing.  (Think fancy schamnzy 5 star hotel room with nursing services included.)  Most patients cannot get a room in there, but apparently Merle gets special treatment because Dr. Cameron is his surgeon.

I’ll post more news as it comes.

MB

Tags: Main, Treatment by MaryBeth
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We just heard as of 1:30 pm that the surgeon was able to remove the tumor.  No word yet as to if they acheived negative margins and Merle is still in the OR.  He is currently having the Whipple done to replumb his system.  We expect him to be out of surgery around 5 or 6 this evening.  We have been told we will be able to see him about 2 hours after the surgeon has finished working.

MB

Tags: Main, Treatment by MaryBeth
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Hello all! Here I sit in the pre-op ward of John’s Hopkins hospital with MaryBeth and Mom (Dad and my brother, Sid, are en route). Dr. Cameron has been by to check in with me and clarified something for me that, although I didn’t understand when he initially said it, MaryBeth said she had understood. When Dr. Cameron said there was a 50/50 chance of the surgery being successful, he meant that there is a 50/50 chance of actually doing the surgery; if they open me up and think they cannot get the tumor (because of blood vessel involvement) they will not proceed and just close me back up. Here’s hoping my luck holds…

Throughout the day, MaryBeth will be updating this post as she gets updates from the OR. Check back often…

Merle

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MB UPDATES TO FOLLOW

8:45am Merle has gone back to the OR. We are supposed to get updates every 2 hours or more often, and I plan to post as we here things. The surgeon has said that if he gets in there and and feels that he cannot get all of the tumor out, he will just sew Merle back up and send us on our way. I guess it is better to leave Merle more or less intact if the surgery cannot help the cancer.

9:45 am We just heard that surgery has started

1:30 pm THE SURGEON WAS ABLE TO REMOVE THE TUMOR!!!! Merle is now getting his Whipple completed and probably has another 4 hours or so before he is out of the OR.

4:00pm Merle did well. The surgeon is finished and remove in his words “99.9% of the tumor.” Because the tumor was on the artery still and had to be scraped off, there is a positive margin. However, the surgeon does feel this should help Merle, especially combined with additional chemo. Merle should be out of the OR (the team is still closing him even though the primary surgeon has finished his job), in about two hours. Then we can see him.

7:00 pm  Merle is in recovery.  We should be able to see him soon.

8:30 pm Merle is into his room in the ICU.  He still has his ventilator tube, a nasogastric tube, a central line, an a-line (a for arterial), and a regular IV.  It is all very cumbersome, he can’t talk, and he is still very groggy.  Now he has to start healing.

Tags: Main, Treatment by Merle
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My 10-year-old niece wrote me a note that my brother gave me when he picked me up at the airport. In it she said, “…I was asked to write about (my) hero and I chose you…” Apparently, my niece wrote this note for me without provocation. People have called me “courageous;” an “inspiration;” a “role model.” You know what, being my niece’s hero means more.

Perhaps I give people inspiration to live beyond their physical / health limits. Perhaps I inspire people to appreciate what they have now. I cannot recall if I have written about this, but I once got a fortune cookie (before my diagnosis) that contained a quote from James Dean:

Dream as if you’ll live forever; Live as if you’ll die tomorrow

I truly believe this quote is representative of how I have tried to live my life these last several months (though, I certainly hope the second half of that quote is not prophetic, especially today). I did not set out to be a hero or an inspiration to anyone. All the better if, through my journey, some have been inspired to so dream and so live their lives.

(It’s amazing how philosophic someone gets when having had a couple of glasses of white zin — which, I would argue ARE clear liquid, and thus acceptable on my all liquid diet).

Merle

Tags: Family, Main, Theology/Philosophy by Merle
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Hey there! I apologize for not blogging last night, but the townhouse we are staying in has no highspeed connection (*GASP*). I am finishing up with my pre-op checkin (just a little bloodwork to type and cross my blood + plus I volunteered to be part of some additional research, so they are drawing some extra blood for that, too). For the rest of today, we are going to go check out a movie, have dinner at my brother’s sister-in-law’s, and then TRY and get some sleep. I have to be at the hospital tomorrow at 6a.

One of the bright spots today was Nurse Mary, who functioned as a patient liaison. Mary spent quite a bit time with me and my posse (MaryBeth, my brother Sid, and my Mom) explaining what I/we can expect tomorrow and for the next couple of days.

The general outline is that I show up at the hospital at 6a; surgery at 9a; surgery will take about 6 hours (though, it may go longer because of the portal vein resection); in ICU for 1 day (possibly another day depending on how things go in the OR); then I’ll get transferred to the general surgical floor (for a total of ~7-10 days); once I’m discharged, I’ll have to stay in Baltimore for some amount of time (the doctor said ~6 days; Mary said ~3-4 days today — we’ll see).

Yesterday was difficult.  I felt like I was abandoning my children (in fact, when I dropped my daughter of at her school, I wondered to myself if that was the last time I would see her — unlikely, but like I said, yesterday was difficult).  I was blue much of the flight to Baltimore, again, just dealing with the reality of Thursday.  Last night, several family members got together for a last ditch celebratory dinner.  As it turned out, I did NOT have to be on an all liquid diet yesterday, so I was actually able to eat with them.

Interestingly, today has been easier than yesterday (perhaps because I have had stuff to day).

Last thought: My father’s side of the family has gotten together at Wildwood Crest, NJ every year for the last 20+ years.  Last year, my family and I had planned to go, but the weekend before, I was hospitalized with a gall bladder attack and a blocked bile duct (which we now know was blocked by the tumor).  Needless to say, I was unable to join them at the beach last year (’cause I’m was in the hospital).  Ironically, THIS weekend is the beach weekend again.  Go figure, I’m in the hospital again.  My brother, Sid, did say that I was going to extremes to get out of going to this family get together.  Let’s hope I don’t make it a three-peat next year!

Thank you in advance for all your well wishes.  I hope to be back online within a couple days (according to Nurse Mary, I will be expected to get out of bed and move around within a day or two of getting out of ICU).  MaryBeth will blog for me tomorrow (while I am expecting a quick recovery, I somehow do not think I’ll be up to blogging tomorrow).

Cheers,

Merle

Tags: Family, Main, Score Box, Treatment by Merle
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Well, I managed to get through the work day, keeping myself busy with mindless tasks around the office (it’s amazing how well distraction can work).  I spent a lot of time, not consoling people, but explaining what was going to happen (and re-assuring them that my wife WOULD post an update to this blog on Thursday evening). 

Tonight I completed my second Wood Badge ticket item as I presented an informational session about cancer to the boy scouts of Troop 549.  Some of the boys knew I had cancer, others did not.  We talked about what cancer was; what it looks like (can you tell if someone has cancer); what causes it; how to treat it; etc.  I asked lots of questions and kept most of the boys engaged (I think).  It went quite well; my only concern was that someone might have brought up my chances of dying.  Luckily, when someone mentioned that some people die from cancer, I was ready with examples of people who received treatment for their cancer and survived.

Tomorrow the fun begins!  Thank you to MaryBeth F. who posted on my blog.  MaryBeth had her Whipple procedure 3 weeks ago, so her input has been incredibly helpful in beginning to understand what is coming up on Thursday.  She didn’t paint a rosy picture (did I mention that my cousin, Martin, said he thought things were going to go so well that I would be able to join my family at the beach on Saturday?).  She was forthright, honest, and I have a better of what to expect (of course, MaryBeth parroted what my oncologist said…my surgery is more complicated than a typical Whipple because of the portal vein involvement).

The outpouring of emotion, caring, and love over the past couple of days has been overwhelming.  It helps so much to know there are so many people pulling for me and thinking about me and my family.  Thank you from the bottom of my heart.

Merle

Tags: Family, Main, On my honor, I will try, Treatment, Work by Merle
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MaryBeth here.

Just to let everyone know, I am practicing blogging so that I can log on and fill everyone in on Thursday evening when Merle comes out of surgery.

Talk to you then.

MB

Tags: Family, Main by MaryBeth
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Today was full of activity: we had ‘water communion‘ at church, then I had to co-facilitate a meeting for parents who want their children to participate in the Our Whole Lives course, finally, MaryBeth and I took the kids swimming at a county aquatic center.  (We left the house at 10a and got back around 7p.)  Whew…I’m tuckered.

Today was also challenging as many folks at church felt moved to convey their wishes of good luck for the upcoming surgery.  I spent a lot of time trying to console these friends, reassuring them that I will be fine.  Unfortunately, in doing so, I became more and more morose, worrying about what may (or may not) happen on Thursday and beyond.

I have to admit that it has become increasingly more difficult to remain “positive” as I get closer to the surgery.  It was one thing to be positive and upbeat about a procedure that was weeks or months away.  Now that the surgery is 4 days away, I’m finding it harder to be positive.  Tomorrow, I’m heading into the office for my last day until my recovery is over.  I have the sense that I will be spending a lot of time consoling friends and colleagues.

People have said I am amazing for how I’m dealing with my situation.  I dare say that people think I’m “courageous” for how I’m handling things.  I found the following quote today:

Courage is the art of being the only one who knows you’re scared to death.

Right now, today, I’m feeling particularly courageous!

Merle

Tags: church, Family, Main, Theology/Philosophy by Merle
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I spent much of today working with my friend, Luis, as he worked on one of his Wood Badge tickets (cleaning up the landscaping at the local elementary school).  The morning was actually quite nice (not too hot, with a very nice breeze).  The afternoon, however, got hot and I started wilting by mid afternoon.  (I had to give thanks, though, that I was not part of the labor crew who were re-tarring the schools roof!!!)

Several people have asked about my stay in the hospital in Baltimore.  I will be checking with my surgeon’s office on Monday to find out about a mailing address, on the off chance people wanted to send me something.  Several people have also asked about visiting while I’m in Baltimore.  I will find out about this, too, when I talk to the surgeon’s office.  I’ve been told to expect to be in the intensive care unit (ICU) for a day or two.  My sister (nurse bigwig at CHOP) said that visitation will be SEVERELY restricted.  The visitor information page of the John’s Hopkins Hospital indicates that each floor has different visiting hours, so I am not sure what the hours will be until I get onto the floor.  On top of all that, as I indicated in yesterday’s post, I’m not sure how I will be feeling even after being moved from ICU.  All of this to say, If you are thinking about visiting, it would be in your best interest to call my cell number (MaryBeth will have my cell phone) before making the trip. 

Last random thought:  I hope Dr. Cameron (or someone on his team) has not read this blog.  I can just imagine Dr. Cameron coming looking at me while I’m on the operating table and saying (just as I go under anesthesia), “I’m a pompous ass, now, am I??”   Then again, even if he did find out about this blog, Dr. Cameron may also be self-aware enough to admit that I’m right.

Talk to you tomorrow.

Merle

Tags: Main, On my honor, I will try, Treatment by Merle
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Today was good, in part, because I didn’t have to deal with doctors or their offices.  In fact, I commented to MaryBeth that we haven’t gotten an EOB (Explanation of Benefits) for at least a couple of days (for a while, we were getting 2-4 EOBs a day).

I am not quite sure how to feel about the upcoming surgery.  I know that my surgeon is preeminent in his field and that Johns Hopkins is a great hospital.  What bothers me more is not knowing what to expect.  I have read accounts of people taking months to recover from this kind of surgery.  Maybe that’s how it will be for me and maybe not.  In the end, it’s just the not knowing that’s bothersome  (I don’t do well with the unknown).  As with my rotator cuff surgery, this is another opportunity for me to grow and develop; to build character, so to speak.  Of course, if you ask those who know me best, they’d likely say I’m already a pretty big character.

I’ve had several people talk about coming to visit me (either while I’m in Baltimore or when I return to Atlanta) and, while I like the idea that people would like to visit, I do not know if I will be up to having them visit.  While he was in the hospital recovering from his Whipple, Randy Pausch basically told folks to stay away.  Send cards and notes, but DON’T VISIT.  Will that be how I feel?  (BTW, I will be posting addresses to which cards and notes can be sent once I find out what is the appropriate mailing address.)

Tonight we celebrated my eldest son’s  13th birthday.  Egad, I have a teenager now.   He chose where we went to eat (a really good burger place called Red Robin) and he wanted to go see the latest Chronicles of Narnia movie (which I thought was quite good; better than the first one, to be sure).  He enjoyed the dinner, the movie, and his presents.  I think he felt celebrated (of course, he was more focused on what he was going to do with the cash he got for his birthday.

I truly hope that this weekend is generally uneventful and…typical.  I don’t want to make a big deal about my going away next week.  Next week will involve a lot of adjustment for my family: beginning of school (yes, we here in Georgia start school on the 2nd Monday in August); MaryBeth and I going away; Grandma Elaine coming to stay with the kids; etc.   Please keep us all in your thoughts; I have no doubt we’ll make it through these next several weeks, but they will be…challenging.

Merle

Tags: Family, Idolatry, Main, Theology/Philosophy by Merle
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