Odd Week

I'm still a bit soupy as I'm writing this, so it may be a little sparse.

Pyschology Consult

On Tuesday I had my first visit with the counselor. It was a lot of a "get to know my situation", but it was a bit of a start. Of what, I am not entirely sure. Perhaps just a place to vent things.

CT Scan

Wednesday I had another chest/abdomen CT. At least this time I didn't need the barium shake. Unfortunately, the tech missed on the left elbow vein, and the right elbow vein ended up quite bruised. Other than that, it was fairly routine. I didn't even get wierded out but the contrast infusion.

Anointing of the Sick

I'd been trying to set things up around the time of my liver surgery, but December is a busy time for everybody. And I just hadn't gotten around to it again until this week. But I finally set things up to be anointed last night. It went well, I thought.

Chemo Naive No More

I don't know what to say about chemo. The process seemed to go smoothly, I slept most of the time from 10:30-2:30.

Time to Find a Hat

Today I met again with Dr. Amatruda to determine where we go from here. Previously I'd noted that the clinical trial which had been tentatively scheduled to begin on Monday was no longer an option. After revisiting the specifics of that, he told me that my recent MRI of the brain turned out okay.

And then we got into my options, which are:

1. Do nothing now
2. "Standard" chemotherapy
3. IL-2

It's not that simple of course, but that is where I'll start. All three options maintain the option of pursuing the Hoag vaccine later on -- if all goes well and a vaccine can be developed and yada, yada, yada.

Dr. Amatruda explained in more detail the IL-2 (I think -- I forget some of the specifics, but I know what the intended meaning of that term as I use it is) treatment. It sounds pretty nasty. And from data available it seems less effective for liver cancers as opposed to tumors elsewhere. The tradeoff is that for the under 10% of people for which it is effective, its beneficial effects can be longer lasting.

The "standard" chemothreapy mentioned is carboplatin + taxol. This stuff has its side effects too, but they don't sound quite as hardcore as the IL-2. It might be more likely to get rid of the tumors, but its effects might not be as long-lasting ("durable" was a term I think he'd used).

So near the end of our discussion, it basically came down to picking one. He asked if I wanted to think about it over the weekend and/or talk it over with Angie or anything. After considering all I've come to understand, I told Dr. Amatruda that I was 90% confident that I'd choose #2. My reasons included the fact that I've got known smallish tumors, so let's take a whack at 'em. And the odds on the IL-2 didn't seem to be worth the physical toll exacted by the treatment. In all cases, all three options remain on the table, as does the Hoag vaccine.

So my appointment then got a little bit extended as I received some "chemo education". This is a bit of a Q&A session with a member of the staff about the particulars of side effects, conditions to watch for, and things to do to lessen the effects. This was followed by a seemingly obligatory blood donation, and I had to set up another abdominal CT -- this time at least I get to skip out on the barium!

Now, one of the side effects will be the hair loss and I've got a strong suspicion that I'm not one of those guys who can pull off the bald look. I've got my baseball caps, but I'd like to try something a little different. I may have to wander into a sporting goods store and see if anything catches my attention.

Ahh, Saturday

Time for a little music break...

Family Portraits

The other day we received the pictures that we had taken over Christmas.



I forgot some of the details of our scheme we'd cooked up back in late December. But I think it went something like this: Karen, Mom, and I had decided to get a number of the pictures in 5x7, and 5x7's come 2 per sheet. So we were each going to end up with an 'extra', so to speak. Instead of that, we decided to 'short' one of the poses and trade for another's 'spare'.

That is, in the above album, I only have 3 of the 5 (I believe) pictures that I wanted. And the same should be true for both Mom and Karen. So I'm going to trade my second Me-Dad-Mom-Karen for Karen's Mom & Dad.

If I remember correctly, I might also be trading my second Karen-Michael-James to Mom for her spare 5x7 of Everybody. I could be wrong there, though. I hope somebody had this written down.

What Next?

This afternoon I got a call from Gretchen regarding the results of the blood test from the other day. Apparently, my attempt to get my bilirubin into a range acceptable for the clinical trial was not successful. Mine's too high or too low for that program, and they denied her request for a waiver.

On the bright side, she also told me I would not have been accepted into that study because my tumors were too small. I had a chuckle as she noted that perhaps she could have told me that first, but I told her I'm generally a "give me the bad news first" type of person.

So what next? Right now I don't know. I've still got the brain MRI tomorrow, and then I'll swing on in Friday to discuss with Dr. Amatruda what our new action plan will be. But at the moment I surmise that I will not be celebrating MLK day by getting started with a round of chemotherapy.

Recent Activities

I tried to figure out the video editing with some material I shot for Christmas, but I haven't progressed as far as I'd like. I think I can handle the on-PC stuff rather smoothly, but uploading it for use here is driving me nuts. One of these days I would like to have back-filled The Christmas Whoosh and Beginning of the Christmas Whoosh with them. Whenever I get around to it, and if all goes well, you'll see an Update or two at the former end of them.

I've been a little busy lately with doctors' appointments, and some of that is somewhat in-process still. After we got back from North Dakota, I had a CT of my chest, abdomen, and pelvis. The day of this test it was snowing and morning traffic was really slow. I had to drop by Suburban Imaging at 9:30 to pick up a barium shake, and it was not all that great tasting. It was kind of like a sports shake, but thicker.

I drank the first half at 9:30 and then made my way in to work. I got there about 10. While my work laptop continued booting, I had to drink the second half at 10:15. By the time I choked that down, it was about 10:30 and time to drive back to Suburban Imaging for the 11:00 scan.

This CT was quicker than both the MRI and PET/CT scans I'd had previously. But whatever they were using for contrast was quite funky. I was told in advance that I might notice a strange taste in my mouth and feel a little warm as it went through my system. I was mentally contrasting with the slow cooling of the saline solution for the PET. But we also went a little off-script.

Apparently, they needed to push the contrast pretty quickly, so one of the technicians had to be present in the room to make sure it didn't go so fast that it broke the connection and might spray all over the place. Well it didn't, and that warmth they told me to expect came really quick. I mean fast. I was caught by surprise, as it took about two seconds for my taste to get funny, my head to get warm. It was quite the rush. And when it ran through my abdomen and down to my legs it felt strangest of all -- like I was peeing my pants or soiling them. All of that was over and done in about 20-30 seconds. And then it was into the giant metal donut.

Prepping for the Experimental Chemo

The first week of January I met with Gretchen Strobel to discuss the what-not regarding the clinical trial for the experimental chemotherapy. Parts of the discussion involved her describing to me the chemicals, the routine schedule, and preliminary tests.

Two days later, yesterday, I met with Dr. Amatruda to discuss some leftover questions that turned up while talking with Gretchen. We also got started on some of the tests, which involved leaving behind less fluid that I walked in with. We also had to schedule another brain MRI for next week.

Dr. Amatruda tried to show me the results of the previous abdominal CT that showed likely tumors on my liver. We had a bit of a time trying to visualize the pictures with the location on my liver as it pertained to the resected areas and the other tumors.

On the MRI, the liver is the big light gray blob in the middle. The bigger darker area that pops up on the left I believe was the resection site. There is a smaller, more circular one that pops up (just above a kidney) in the second-to-last picture of the animation. It is a little more to the right of the first blotch. I'm not sure if that is the second resection site or a possible tumor.

Anyways, they're doing some blood test and such. I'm slated for the brain MRI next week Wednesday. And if everything comes up okay, I'd start chemo on MLK day. The clinical trial goes by the short name of A Randomized, Double-blind, Phase 3 Trial of STA-4783 in Combination with Paclitaxel versus Paclitaxel Alone for Treatment of Chemotherapy-Naive Subjects with Stage IV Metastatic Melanoma.

The Christmas Whoosh

Tuesday morning we (Angie, Heather and me in one vehicle, Michael and Brooke in another) got off to a late start. We hit some weather along the way and didn't get into town until evening. My sister Karen, younger nephew James, and Karen's friend Jay had a far worse ordeal as Seattle had all but shut down for a couple days to deal with the snow. Instead of leaving Sunday, they couldn't get out of Seattle until Tuesday. But their connecting flight from Denver left before they could meet it, so they didn't make it in until shortly after noon on Christmas Eve. She wasn't happy.

Angie, Brooke, Heather, Michael, and I started the Christmas Eve festivities in Mandan at Darcy and Harley's with some contraband snacking before dinner at Angie's folks' house. After dinner we opened gifts.



Brooke went to her dad's for her continued Christmas Eve gift openings, and we returned to my parents' house. Karen had been busy wrapping the presents she had shipped to Mom's and fully intended to wrap days earlier. And we all but turned right around and unwrapped them.



Santa brought Heather more goodies Christmas morning, but Daddy (yours truly) was sleeping in and didn't catch any pictures. Angie and I went to visit her brother Marv and his girl Jill for an hour or two in the afternoon. And then we tried to get the Sinkula Christmas dinner going. The turkey wasn't cooperating very well, but eventually it all came together. And Daddy got stuffed.

Later that night, after playing a bit of Blockus, Angie found two dogs playing in the snowdrift. They didn't appear to belong to any house in the near vicinity, so I called the number on the tags. It turns out they belonged to my old buddy Troy, who had just shipped overseas in early December. I emailed him, saying, "Small world, huh? Two dogs from Tennessee bump into two Twin Cities residents in Bismarck."

On Friday, I also got a nice surprise in a phone call from my friend Mark's wife Lisa. We chatted briefly, as Angie, Heather, and I were off to meet up with Angie's friend Tanya, her husband, and her four boys at Kroll's. Later I returned to my attempt at being Mom's PC tech support. Eventually I had success getting her B&W copier/printer working again -- but not before spilling toner on the white carpet. I did call Mark later and did a quick catchup of what now turns out to be over a year since we had last met up in Fargo.

Meanwhile, Michael volunteered to join Angie to visit her friend Nicki in Flasher, ND. Meanwhile I continued trying to figure on Mom's printer issues; hours later I threw in the towel and talked with Karen and Mom for a bit. I managed to figure out "the other secret" to Mom's "secret" chocolate (and butterscotch) chip cookie recipe.

The snow picked up Friday evening, but I was dead tired. Angie called to note that they were leaving Flasher about 11. I made it maybe a half hour, but zonked out shortly thereafter. The phone rang a little after midnight, and caller ID showed it was from Angie's cell phone, but she left no message. I tried to wake up enough to call back, but I got no answer. Shaking off some cobwebs I went outside to grab a smoke and watch the falling snow accumulate. I called again about 20 minutes later and still got no answer. So I called some Highway Patrol number and checked the weather radar online. After a couple back-and-forths with the HP guy, Angie called and said that they were just leaving Buck's, where Michael wanted to make a quick stop. I called the HP back with the news, and returned to grogginess.

Saturday we were having family pictures at 10 am, so we had to get everybody up and dressed "early". We managed to get everybody there on time and the sitting went well, but of course it took longer than expected for Mom, Karen, and me to make all our selections. Finishing up just after noon, we stopped at home to grab a quick bite to eat and then get ready to head out to the Elk's.

From 2-4 we were celebrating Mom and Dad's 50th wedding anniversary. I really enjoyed visiting with many of our old neighbors and meeting some of the people Mom has worked with. We thought things turned out very well.



After cleaning up, "us kids" and our kids wandered off to Midway Lanes. We invited friends Dan and Sandy to join us, and we all had a really good time. And then it was time to pack for home.

Thank you, everyone, for a great Christmas. I wouldn't want it any other way.