I’m Not Dead Yet (I.N.D.Y.)

Last night I went with my kids to karate at American Karate.  I didn’t teach class, but instead went to see all the students and parents who have been so supportive of me over the last several months.  It was great to see everyone, though, I felt a little badly that I didn’t have my uniform with me (my friend Luis would not let me go if I was going to wear my uniform), as they must have had 30+ kids on the mat.  Unfortunately, by the end of the 2nd class, I was pretty tired and sore, but we had talked about going out for dinner to celebrate MaryBeth and my return home.

so Luis and his family and MaryBeth, the kids, and I all went to Applebees for dinner.  One thing I have noticed since my surgery is that I am even more sensitive to temperature and it was FREEZING in the restaurant.  I seriously thought about going out to the car and getting a blanket, but I decided that it would not be socially appropriate to wear a blanket in the restaurant.  (See, for those of you who believe the contrary, I do have some social graces.)  By the time I got home, I was ready for a shower and bed and it didn’t take me too long to fall asleep.

This morning, the boys had an activity at the scout hut (actually, only my younger son went, as my older son — the now TEENAGER — decided that he’d rather sleep the morning away).  Again, I went to the hut and watched what they were doing.  I was careful not to lift anything and only really walked from one place to another, but again, after about 1 1/2 hours, I was done.  I came home and had to nap (and if you will remember, I do NOT nap).

All of this is to say that I am trying to come to grips with the fact that I am ONLY 3 weeks out from major abdominal surgery.  Just because I have been cleared to drive and do more activities, doesn’t mean I have to or even should do them.  That’s hard for me to wrap my head around.  I had a friend suggest that, to avoid from going stir crazy, I consider going into work even for a couple of hours, but at this point, I don’t think that is a good idea.  I may continue to check my Email against my supervisors advice, but as I have a doctor’s note excusing me from work until the end of September, I don’t see the need to rush back.

I do have to say that I am getting tired of my tummy being sore all the time and having to take Ibuprofen every 4 hours.  I know! I know!  It’ll get better.  I’m better today than I was last week; I’ll be better next week than I am today; doesn’t mean I have to like it!

Have a great (rest of the) weekend.

Merle

Tags: Family, Main, On my honor, I will try, The Martial Arts, Treatment, Work by Merle
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I met with Dr. Kauh (my oncologist here in Atlanta) today and we have a post-surgical plan. Next week, I will have a re-staging CT and additional blood work that will serve as the new baseline regarding my cancer. The following week (9/17), I will begin chemotherapy (Gemcitabine, a.k.a., Gemzar) to attempt to kill any of the left over cancer cells. If you will recall, there were cancer cells left on the mesenteric artery (positive margin) and in some of the lymph nodes that were extracted. Dr. Kauh did say it was “troubling” that there were cancer cells left after the surgery (though, I think he was simply saying that he – and I – would have preferred that no detectable cancer cells had been left).

Thus, starting in two weeks, I will go into the hospital once a week for about 2 hours to get my chemotherapy. I’ll do this for 3-weeks and then have a week off. After 6 months, I’m done. Dr. Kauh said at that point, we cross our fingers and hope the cancer doesn’t come back. He said it’s possible that if the cancer comes back we may be able to discuss an additional surgery (depending on where the cancer presents itself), but that we would worry about that if it happens. We’re being (trying to be) positive at the moment — at the moment, it seems harder than usual, but it may be because I’m tired.

I did receive good news from my father; the results of his latest CT came back negative. As I have said, I really (REALLY) hope that I got the hearty Hamburger (anti-cancer) genes that my father seems to have.

In other news, when I got to the hospital today, I was told that I had to go see a “resource counselor.” Now, I briefly thought that perhaps this meant that there was someone who was going to talk to me about what resources I had / needed to help me and my family deal with my cancer. HA! Instead, “resource counselor” is code name for financial dude who wanted to know why I (or my insurance) had not paid some bills. (Silly me for thinking that the counselor was going to try and help me.) In the end, the counselor forwarded the issue onto the department at Emory that deals with insurance issues.  We’ll see what happens.

Finally, I went to a pancreas cancer support group at Winship Cancer Center this evening.  I was expecting the group to be primarily composed of 60+ folk, but I was pleasantly surprised.  The group was a good mixture of younger and older folk, many of whom had recently been diagnosed (e.g., diagnosed in 2008) and had had the Whipple procedure.  Several other folk were multi-year (3+ years) survivors, which was very nice to hear.  It was difficult, however, to listen to the stories of two of the gentlemen in the group, whose cancer had already metastasized, so they were not eligible for surgery.  Instead, theirs was a life of palliative care, trying to extend their lives as long as possible.  I can only imagine how hard it must have been for them to listen to the rest of us talk about the difficulties of life recovering from surgery.  All in all, I am looking forward to going back to the group next month and to getting to know the others in the group over the next several months.

More tomorrow.

Merle

Tags: Family, Main, PanCan, Treatment by Merle
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I’m Home!!!!!

My goodness but it feels great to be home.  The trip home was harder than I expected.  Even though I’d been cleared to carry things up to 20lbs (previously, I was only able to carry things that weighed less than 10lbs), I still had to fight with MaryBeth over what I could (and could not) carry through the airport.  At one point, I thought I would need a wheelchair to get around, but I was able to walk to the gate in Baltimore.  Once we got to Atlanta, though, MaryBeth made me take the courtesy electric cart from our gate (which was almost at the end of the concourse).

For those of you who haven’t been to Hartsfield Airport, there is a train that travels between the (five) different concourses.  I usually walk from whatever concourse the plane parks at to baggage claim.  Today: not so much.  I took the train AND sat down while I was riding.  My friend, Luis, picked us up and delivered us home (though, I have to say that I am not entirely sure whose home I am in; the furnishings and whatnot look familiar, but it was entirely TOO neat and tidy to be our house).  Again, thank you to Susan and Rachel for helping getting things ready for our return (including flowers and a ‘Welcome Home’ sign).

As I have mentioned previously, I belong to a Unitarian Church.  Several members from that church have had medical procedures, and they each used a recliner (the same recliner) during their recovery (apparently, the recliner has been past from person to person as needed).  Well, I spent some recovery time in the UUCG Recovery Recliner this afternoon.  I look forward to spending more time in it during the weeks to come.

Thank you to everyone who has brought food over the last week.  A quick look in the fridge lets me know that we have enough food to last quite a while (of course, given that I cannot eat that much anyway means the food will go that much farther).

Merle

PS: In case there are any smart alecks who think to correct me about my “Shawshank Redemption” quote, I suggest they check out this YouTube video clip. ’nuff said.

Tags: church, Family, Main, Treatment by Merle
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The appointments have happened; the notes have been collated, and the answer is in: I have been cleared to fly back home!  YEAH!  Dr. Cameron was very pleased with my progress (saying that he wished all of his patients did as well as I have done — of course, most of his patients are significantly older than me, but who am I to argue with a surgeon?).

I’ve been forced to re-assess my opinion of Dr. Cameron over the past couple of weeks.  It is true that the first time we met, Dr. Cameron did not exhibit a particularly friendly bedside manner.  Just before and after the surgery, however, he was much more pleasant and friendly.  Perhaps he reserves his “friendliness” for his patients; whatever the reason, he was very pleasant today and I left our appointment feeling very positive.

MaryBeth and I will fly home tomorrow morning.  Again, I want to thank Nancy and Rob for using skymiles to cover our tickets back home; what a wonderfully sweet gesture.  I am so looking forward to seeing the kids and hugging each of them (even my 13 year old who will, likely as not, want to have nothing to do with hugging his father).

I feel very lucky that my colleagues at CDC donated so many hours for me; I truly do not feel stressed about getting back into the office (though, despite my supervisor’s expressed instructions, I still check my work Email regularly — and provide feedback as needed).

As I said, I am very excited about ending this phase of my treatment.  No one really knows what the future will hold.  There are some things about my surgery that did not go as well as we all would have liked (lymph node involvement and some cancer cells being left on the mesenteric artery), but a lot of what happened was great!  My incision is healing nicely; the nerve endings are regenerating (which means my abdomen is INCREDIBLY sensitive right now); and the pain is largely tolerable (though, I still had to stop 1/2 way through the 2 hour car ride down from NJ).

Earlier this week I watched “The Shawshank Redemption” on television and at one point Andy (Tim Robbins) says to Red (Morgan Freeman), “You either gotta get busy living or get busy dying.”  Well, as the title of this blog says, “I’m Not Dead Yet!” So I am looking forward to getting on with my life, finishing up healing, and enjoying time with my family, friends, colleagues, and supporters.

You all have been wonderfully supportive during this journey; thank you for staying with me up until this point.  I hope you stick around as we continue down the road a bit more.

Merle

Tags: Main, Theology/Philosophy, Treatment, Work by Merle
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Tomorrow, we travel back to Johns Hopkins for my follow-up appointment with Dr. Cameron.  Tomorrow also will represent a full 3-weeks I will have been away from home.  I expect Dr. Cameron will clear me to travel back home to Atlanta on Wednesday, and I find myself again stopping and thinking about, and wanting to thank, all the people who have been instrumental over the past 3 weeks.

First, I want to again thank my mother-in-law, Elaine, who came to Atlanta on August 12 and just left to go back home this past Sunday.  Seventeen days with a 13-year old, an 11-year old, and an almost 5-year old.  I fail to find adequate words to express my gratitude to Elaine for watching our kids.  Following on the heels of Elaine is my sister-in-law, Susan.  Susan went down to Atlanta on Thursday and has been watching the kids since.  Again, without Susan, I’m not sure how we would have made it these last few days before we travel back.

Next, I need to thank my mother, Sydney.  Not only did Mom come up and visit with me every day I was at Hopkins, she also opened her house to MaryBeth and me for the last (almost) 2 weeks.  Had we not come to NJ, the wait for Dr. Cameron to get back from his vacation would have been prohibitively expensive.  While Sydney has said to me on multiple occassions, “Mi casa et su casa,” it takes a special person to open up their home for so long to guests.

Other folks that need to be thanked include Marina, who has organized the “Hamburger Helpers;” all of the people who have signed up to be Hamburger Helpers; and the folks, primarily from Eastminster Presbyterian Church, who have been supplying meals for Elaine/Susan and the kids, this last week.  Finally, I want to send a special thank you out to my friend, Luis, who has graciously helped out around the house and served as an airport shuttle for folks, as needed.

I will be sure to update everyone on what Dr. Cameron says tomorrow and with all the luck, I’ll be writing this blog from Atlanta on Wednesday evening.

Merle

Tags: church, Family, Main, Treatment by Merle
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