I’m Not Dead Yet (I.N.D.Y.)

Hello blog readers. Let me apologize about not blogging yesterday. The condo in which we are staying does NOT have a wireless connection (and I didn’t find this out until we got back from the evening’s festivities, which I’ll talk about that in a moment).

Our day began in beautiful, north Valdosta; all of us were rested and ready to get going. We actually made extraordinarily good time, which was a bad thing. You see, our room was not supposed to be ready until 4p, so when we were about 30 minutes away at 1p, we had to think of something quickly. As we were driving down Route 27, looking at the citrus trees, MaryBeth wondered aloud whether there was such a thing as “U-Pic” oranges. Not 15 minutes later, what do you know? We find a U-Pic Citrus farm. How better to pass the time?

So we pulled off and picked ourselves a ¼ bushel of oranges – couldn’t ask for much fresher, eh? (I have to say, though, that I still prefer to pick apples, as it is MUCH easier to eat the <ahem> fruits of your labor when one is picking a fruit whose skin can be eaten.) Nevertheless, 10lbs of oranges and an hour later, we were back on the road again.

We arrived at the condo around 2:30p or so and, well, our room wasn’t ready. Hmmm…we had a car full of anxious children, luggage, and dry foods – what to do? SWIM! So we dug through the suitcases (which, of course, were in the most inconvenient part of the car) and got everyone’s swim suit. We swan in, what I am sure, was a heated (to bathtub temperature) pool for about 45+ minutes. After which, I got dressed and checked in.

We unloaded the car, unpacked, did an inventory, went shopping for remaining necessities, came home, made and ate dinner, and then we were off to the races. The plan was simple: head over to the Polynesian Resort and watch the Electric Light Parade (a water based parade of lighted floats) and then watch the fireworks over the Magic Kingdom.

What we didn’t plan on was the blustery, near hurricane force winds (well, okay, probably not THAT windy, but it was pretty darn windy), that impeded MY enjoyment of the evening. Hey? I’m in Florida – you know, sunny, WARM, Florida. Well, guess what? When the sun goes down, it’s not so warm. I was out in my short sleeve shirt and shorts and was FREEZING. (Have I mentioned that chemo makes me temperature sensitive??)

Well, I found a towel, wrapped it around myself, and tried not to shiver too much. The kids thoroughly enjoyed the beach outside the Polynesian Resort and did not even notice (I don’t think) the cool temperature. I endured and the gang saw the fireworks (I even was quasi successful at getting images (which, is difficult if one does not have a tripod). Then we piled into the car, got back to the condo, threw the kids into the bathtub, and everyone promptly fell asleep (except me, as I am sitting up late writing this blog in Word, so that I can upload it more quickly tomorrow).

There you have it: a somewhat brief exposé of Day one in Disney.  I have embedded the slideshow below, but if you would like, you can see a larger version of it on Flikr here.

Tomorrow, the FUN really begins.

Merle

Tags: Main, Score Box 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

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For those of you who don’t know, in the “Hitchhiker’s Guide to the Galaxy Triology” a super computer was constructed to answer the question: “What is the meaning of life, the universe, and everything?” As it turns out, the answer was 42. Which, as Aunt Catherine (MaryBeth’s sister) pointed out is also my birthday. I am not sure I agree that I am part of the answer to life, the universe, and everything…but who am I to argue with such reasoned logic??

Rhonda asked, in response to my post about the levels of various biomarkers, about my CA19-9 (carbohydrate antigen 19-9) levels. The CA19-9 test is a blood test from the tumor marker category. Unfortunately for me, the CA19-9 is not a very good measure for identifying pancreas cancer because those of us with this type of cancer have a deficiency of fucosyltransferase that is needed to produce CA19-9. With all that as background, through the 8+ months leading up to my cancer diagnosis my CA19-9 levels were in generally in the 40s (normal levels are 37 and lower). Rhonda, in answer to your question, the oncologist only ran the CA19-9 once since he’s seen me; when he ran it, my level was 58. (One does not get terribly upset until this biomarker is 200+ or more.)

As Cathy mentioned, a friend had ordered me an “I’m Not Dead Yet!” t-shirt from Zazzle. Here is a link to the Zazzle page with that t-shirt. I am partial to the ‘Ringer T-shirt’ (the one with the colored neckline and sleeve bands). While not necessary, please feel free to order your own today. Who knows, perhaps they’ll be worth something some day!

I know I have said this before, but I wanted to again say how lucky I feel to have so many people pulling for and supporting me. Whether it’s just reading my blog and leaving positive thoughts / comments or doing something else, I really want you to know how meaningful your love and caring are to me. From the bottom of my heart, thank you!

Last thing, MaryBeth and I spent some time with an LCSW on Monday to discuss how my cancer is affecting our relationship, as well as the impact it has on our kids and our relationships with the kids. Jean, the LCSW, sent us a flyer yesterday for a program I wanted to let you all know about. The Jack and Jill Foundation for Late Stage Cancer is dedicated to provide memorable experiences for families with young children whose parents have late stage cancer. The foundation is based here in Atlanta and I have volunteered to provide photographic services for families on these WOW experiences. I think this is a great organization and I encourage you all to do what you can. I am not currently eligible for the foundation’s services, so in the meantime, I’ll provide those who are with whatever support I am able.

Until next time…

Merle

Tags: Merle, Miscellaneous, Score Box by Merle
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Early in my diagnosis, I remember sitting in the oncologists’ waiting area and I picked up a magazine that had an interview with a karate instructor who also had colon cancer. She described a variety of different activities she felt were helpful to her. In particular, she had said it was helpful to imagine that the her white blood cells were like PacMan, going around and gobbling up all the cancer cells. After a while, the karate instructor imagined her white blood cells were little karate guys “kicking cancer’s butt!” A couple of days earlier, I had someone else suggest that I should envision little PacMen going around my body and eating the cancer cells and all I could think is, “Do people really do that?”

I have been called many things in my life, but chief among them has been analytical (as in, “You are too analytical to believe in _____” or “You’re so damned analytical!” or simply, “You are SUCH a scientist!”). Apparently visualization works for many people, but I think, as with many of these kinds of ‘treatments,’ it is necessary for the person doing the visualization to believe in it; I don’t believe, so I do not think I’m a good candidate for it. I guess I’ll have to put my faith in the slash, burn, and poison methods of cancer treatment (in medical parlance that would be surgery, radiation, and chemotherapy).

Health update time: After a rough first couple of days, this week, the last couple of days have been pretty easy going. As I said previously, I felt much better on Wednesday after sleeping upwards of 12 hours on Tuesday. Today, I was very tired around 3p and ended up sleeping (hard) for a couple of hours. I did get the report of my labs this week. For those keeping score at home, my platelet count this week was 105 (with a normal range of 150-400). Last week, it was also low at 110, and I didn’t hear anything about it. My lymphocyte level was 5% (normal range 15-43) and my monocyte level was 16% (normal range 5-12). My doctors said my bloodwork looks okay, so these abnormal levels apparently are not enough to raise concern. I will follow-up with my oncologist (or my personal medical authority — my big Sister — who is a muckity-muck (a very technical medical term) nurse at CHOP).

Other than that, I am very much looking forward (as I believe I mentioned yesterday) to my brother and his son visiting tomorrow. My kids are looking forward to having their cousin visit and actually spent some time at the dinner table discussing (just short of arguing) about with whom their cousin will sleep. I think we’ll just put all three of the boys in one room and let them work it out.

Until next time…

Merle

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Tags: Merle, Score Box, Theology/Philosophy by Merle
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First, let me say that I am feeling SOOOO much better today than I did on Monday or Tuesday of this week. It’s amazing what 12 hours of sleep helps one’s physical and mental status. Today, I worked a full day at the office and am still kicking around 10:30p (okay! Okay! I’m going to go to bed after this post!)

As I have mentioned previously in this blog, I have been pretty involved with the scouting program. I began as a leader when my oldest son was a “Wolf;” I continued to be his leader through “Bears” and “Webelos I.” At that point, my younger son requested that I be HIS leader, so I continued as my younger son’s “Webelos I” and “Webelos II” leader. (The Webelos rank spans both 4th and 5th grades.) Now that my boys have crossed over to Boy Scout Troop 549, I have looked forward to being an adult leader in the troop as well.

Unfortunately, my ability to serve as an adult leader has been somewhat hampered by my cancer diagnosis. Specifically, I had hoped to participate as an adult leader on outings the troop took, such as the recent 20 mile hiking trip, the fun water weekend, and the upcoming scout summer camp. Unfortunately, my oncologist suggested that trying to go on a 20 miles hike was not the brightest idea given my current health issues. I had to skip the water weekend, as I had to stay home to complete treatment for the week. This coming Sunday, my boys are heading up to Camp Rainey Mountain for a week of BSA summer camp. Right now, I’m hoping to make it up to camp a week from tomorrow to demonstrate to the scouts outdoor cooking techniques (as part of my Wood Badge ticket). I am hoping that I will feel well enough to: (a) actually go up next Thursday and (b) stay until Saturday. That would make me happy! Here’s hoping.

Friday my big brother comes to visit with his 5 year old son. I’m really looking forward to seeing Sid and and his son. It is difficult not having family closer, so having them visit will be a pleasure.

Until next time…

Merle

Tags: Merle, Score Box by Merle
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