Tuesday, March 16, 2010

Obituary

Dave Sinkula, 40, Coon Rapids, MN, died on April 14th, 2010 after a long battle with melanoma. Services will be held at 10:00 a.m. at Eastgate Funeral Service Chapel, 2302 E Divide Ave, Bismarck, ND, with Rev. Paul Becker officiating. Burial will be held in Fairview Cemetery, 2929 E Century Ave, Bismarck, ND.

Visitation will be held from 5 to 8 p.m. at Eastgate Funeral Service, Bismarck.

Dave was born on March 8, 1970, in Bismarck, ND, to Donald and Lillian Sinkula. He lived in Bismarck, in the same house with his parents and his sister Karen, for 18 years. After graduating from Century High, he attended the University of North Dakota in Grand Forks, ND, from 1988 – 1992, pursuing a degree in Electrical Engineering. While at UND, Dave began his first of seven co-op work assignments with 3M Co., mostly in the St. Paul, MN area. In the fall of 1992 Dave transferred to North Dakota State University in Fargo, ND. He completed his Bachelor of Science Degree in Electrical Engineering in December of 1994.

Following graduation, Dave went to work at Phoenix International Corp. in Fargo. Feeling an urge to leave the Red River Valley and start fresh, Dave left in August 1995, headed for the Twin Cities. He decided to meander a bit before arriving at his destination, passing through Austin, TX and Colorado Springs, CO to visit friends in a roundabout vacation before settling into job hunting full time.

It took until December of 1995 for Dave to find a job as an embedded software engineer for Interactive Technologies, Inc. in North Saint Paul, MN. He really enjoyed working at ITI with a wonderful group of people to both work and play with.

In the boom times that were the late 1990’s, Dave left ITI and began working at J. Gordon Electronic Design, Inc., Fridley, MN in 1998. Like ITI, Dave loved being with JGED both for the work and the people he worked with.

Boom gave way to bust, Dave was laid off; he later found a job with Ecowater Systems in Woodbury, MN.

Dave met Angie Olson at a friend’s wedding in 1997. The two have lived in their current residence in Coon Rapids since 1999. After a long period of getting to know one another and Angie’s daughter Brooke Jundt, the two were married on July 12, 2003 at Corpus Christi Catholic Church in Bismarck. Their marriage was blessed with a daughter, Heather Maggie Maye Sinkula, born on June 6, 2004.

Dave loved to laugh and was most fond of being a dad. Dave enjoyed fishing, hunting, camping, and loved to work in his garden. Most can agree that he spent quite a bit of time on his computer – often spent working with pictures and video, and later blogging and micro-blogging.

He is survived by his mother Lil; his sister Karen and nephews Michael and James Truong (Seattle, WA); his wife, Angie; his daughter, Heather; and step-daughter Brooke. He was preceded in death by his father, Donald (October 11, 2009).

Fatigue and Frustrations

I had a bit of a monologue on IRC earlier today:
  • I've been less than positive about my health lately...
  • In January, I was thinking I had weeks left.
  • These days, weeks seems kinda lofty.
  • I don't know how much longer I'll be strong enough to participate in even the simplest online communication.
  • If I was crossing below 50% strength in November, I feel like I'm down to 10% now --
  • Which gives me a much better idea of what 90-100% of "normal" really was -- and it would be difficult for someone feeling "normal" to know what I mean.
  • Imagine your worst case of the flu: I'd say that weighs in at 60%.
  • I think about getting a wheelchair because walking down a 100' hallway (at work or a grocery store) seems like running a marathon.
  • Hell, going downstairs for a smoke requires returning back upstairs. :(
  • I don't know how much longer I have the strength to do stuff.
  • I had to ask Angie to take Heather to school from now on because I get so tired with even that minimal work.
  • Or at least the one time I parked in the handicapped zone at the school and tried to pick Heather up from school -- I had to sit down after walking across the short distance to the Kindergarten door.
  • And I needed to stop at the front of the school to rest before crossing the street.
  • Lemme make a map...

  • View Larger Map
  • The handicapped parking is "below" the "D-shaped" indent coming from Crooked Lake Blvd onto Morris Bye's property.
  • Closest to the school is the bus lane.
  • The Kindergarten entrance is on the south end of the school, near where the one-way bus lane and parking entrance are found. "B"
Questions, Questions, Questions

I have been frustrated quite a bit lately when discussing things with nurses and such. I feel tired; I wish I didn't. I try to fight for some energy, but it wears me out. But when it comes to answering questions about how I'm feeling -- it almost drives me nuts. It's like I'm not picking the answer that they want me to pick.

I think it all got started heading the wrong direction after I got the tube installed. I had been taking a liter off every day starting Sunday following its installation on the previous Friday (where 4 liters were drained). Initially taking the excess fluid off provided relief. But after a week or so, I was feeling pretty tired and weak. I had a visit with Dr. Amatruda on the Tuesday that followed.

Mainly, they wanted to steer me towards hospice care; I did have the initial visit by a hospice representative but that went like crap. I had opted for the 2nd round of chemo so that I could see the results in a subsequent scan. Because I had done so, I kept getting non-answers from the representative.
  • What do they do if I'm on hospice?
    We'll have to do an examination to answer that.

  • Will I still be draining and whatever?
    We'll have to do an examination to answer that.

  • So it's mostly just filling me full of painkillers?
    We'll have to do an examination to answer that.
I'm being hyperbolic there, but it seemed like 30 minutes of hearing, "We'll have to do an examination to answer that." I ask questions, I get no answers.

Well at some point I got to talking to Michelle about not feeling very energetic. The answer I was hearing, whether or not that's what was meant, was: "Do nothing and live with it, or check into the hospital and expect to be there for a few days."

I was looking for a little more gray area with options. Instead, I've done my best to tough it out. Last week I started skipping the draining for a day -- so I skipped Thursday and Saturday and today (Tuesday, March 16). I haven't felt too bloated, and if it's better for me to leave the fluid for its nutrient value, I've chosen to try that. Besides, that was supposed to be one of the side effect/benefits of the chemo.

I have now finished the 2nd round of chemo. There was no scan scheduled. Why the hell not? I haven't a clue. It's kinda the point to have a scan to see if the last two rounds of chemo have done anything for me -- it's the only way to find out. Michelle said once over the phone that since things didn't look good and they mentioned "hospice" that I'd be off on that route (and apparently have no interest in my current health!?).

But what has been tremendously annoying with this is that during this past two months I've been asked, "What's the pain like?" For me, it's not the pain. There are many pains: some are sharp, some dull; some are persistent for a time, others are intermittent; some are really painful, some are mere annoyances. Some is related to nausea, some to the chemo I was taking, so is due to lying in bed a lot. Some is from the fluid. I have a wide array of pains from my left heal to my shoulders. I have fatigue in my legs. I have shortness of breath -- which combine to hurt when I walk up and down the stairs.

I try to explain this, and I get the "you seem bitchy" response. No shit? How the hell else do I answer the question without answering the question?

So I go from one extreme to another: getting non-answers to my questions, and seeming to get non-answers to my replies to questions. What am I supposed to do? I feel like I'm in China or somewhere where I don't speak the language.

Let Me Try To Finish on a Positive Note

It's hard to remain positive with all of this going on. I did finally get Fr. Bill to the house, and that did a great deal to boost my spirits. I had a pretty good confession -- I finally got a handful of things off my chest (although I had already "confessed" to Angie these same things several times).

I received "last rites" again as well (the Church may change the name, but I still think of it as Extreme Unction). I haven't heard any spirit talk to me like I did the first time, but I wasn't expecting such a thing -- hoping, not expecting. Much like I hope for a miracle, but I refuse to expect one.

Prayer does help me, but I don't expect prayer to equal a miracle. If the Lord so chooses, I would answer the calling. Living or dying: both are going to be hard work.


My posts this year have been more of a free-form rambling than I'd tried to do previously. I blame the fatigue and frustration.

Saturday, February 13, 2010

More on My Belly

This belly fluid continues being my latest issue. I first noticed it at the start of the year.
  • January 22: 5.5 liters
  • January 28: 5.0 liters (6 days later)
  • February 5: 6.1 liters (8 days later)
  • February 10: 5.1 liters (5 days later)
  • February 12: 4.0 liters (2 days later)
To me, it's seemed like the day that I get drained is the only day I feel normal. Then I quickly seem to fill up again, doing a lot of gurgling (don't ask me, that's the best I can describe it). On Friday the 12th, I had the "permanent" tube installed; I was surprised they got another 4 liters, but then again I wasn't.

I've been dealing with the tube since Friday. It's just pretty sore there. I haven't peeked under the dressings yet, but I'm supposed to have a nurse come by tomorrow to teach my how to do the draining and changing dressings myself.

As to what the fluid is and why this is happening, I don't really know. I hear some things with the nurses and doctors I talk to. Sometimes I wonder if I hear a sugar-coated explanation or not. It is apparently lymph fluid. It's because "my body is out of balance", or perhaps my kidneys or liver aren't working quite right.

I eat better when I am not so bloated, and I have really been trying to eat more. I see myself in the mirror and look skinnier and skinnier; I try to eat. When I was more bloated, say in the "over 4 liters" vicinity, I felt a lot of pain in my lower abdomen. I don't miss not having that at the moment and I hope I can keep it that way.

But I'm still not feeling all that dandy. The last time I really felt good was over Super Bowl weekend when Tony and Karen came to visit. I really enjoyed their visit and I am so glad that I was feeling as good as I was. (I had been drained that Friday morning and they arrived later in the day.) And Noel and Cathy dropped by the day of the Super Bowl too.

I "had my voice" during that time too, which was also quite nice. Too much of the time I feel winded or find it hard to talk at a louder volume or for any length of time.

Sometimes I feel kinda dandy, even if for just a fleeting moment, and I think, "I've fallen so far, but I'm feeling good and I can't wait to be myself again." And I'll imagine a time when I'm out working on the yard and doing normal things again. I may feel that way once or twice a day and almost every day.

But there are a lot more times when I'm lying in bed having a difficult time turning on my side to take some pain meds or something. This is difficult, and it's hard for me to tell which way I seem to be headed. I'm tired a lot and have a hard time getting comfortable. I really miss "normal".

Update (Feb 14):
Today a home care nurse came in to drain me and begin showing me how to go about doing so myself. It's not a terribly complicated operation; it will be a bit unwieldy at first for me, though.

Here's what it looks like with the dressing off (before draining me):

Wednesday, January 27, 2010

Now My Belly?

Since about the first of the year, my belly had grown more and more bloated. It was one of the things we had discussed during my last appointment with Dr. Amatruda (it is due to the spread of the cancer to the omentum), but at the time we had not set up an appointment to do anything about it. It seemed that doing so was not that big of a deal once I'd decide.

That weekend, about the 16th of January, it was really beginning to bother me. I tried going about my business early the next week, but it was putting pressure on my stomach which would make me nauseous after eating. So I called the clinic and they made an appointment for Friday the 22nd to do a paracentesis.

This fancy term means that we drained my belly of the fluid. And drain we did. I watched as bottle after bottle filled. My signal to give up was when some bowel interrupted the flow by getting sucked onto the one end of the tube, cutting off the suction (and being a noticeably unpleasant feeling). In all, 5.5 liters was drained.

Since it was a gradual increase, the sudden return to "normalness" itself felt wierd. One thing I recall is that it seemed odd to be able to bend over to put my socks on. They told me that each liter of fluid was about 2 pounds, so I apparently dropped about 10 pounds in a 20-minute span as well. I quickly took advantage of the situation and had Angie stop at the Olive Garden on the way home. So I feasted.

Even this past weekend -- only a day or two after this procedure -- it almost seemed to me that I was getting back to bloated again. Well here it is not even a week later and I can say that again my belly is bloated and again I'm almost an outtie. I made an appointment to have another paracentesis tomorrow.

This time, they might put something in that will stay in and then be able to be "tapped" -- somehow -- to drain off the fluid without always going through this procedure. The procedure itself seems to share a bit with being a pregnant woman: I've got the expanded belly, they look around with ultrasound.

Anyways, I'm not sure about this more "permanent" tube or whatever. I imagine I'll find out tomorrow. But again it will be nice not to be bloated all of the time.

Wednesday, January 13, 2010

My Prognosis

As I'd hinted, I had a little bit of advance notice of bad news. Michelle, Dr. Amatruda's nurse, called me yesterday afternoon and asked me if I wanted to know the result of the recent PET/CT. Previously, I have waited to hear from Dr. Amatruda so I could ask questions right away if it was bad news. But since I've already had bad news, I decided to go for the word up front.

She told me that the PET/CT showed that my cancer had spread again. It was now in my pelvis and omentum, a membrane in my abdomen. The tumors in my verterbra had grown. But the liver was looking okay.

I let Angie in on this late last night, after Heather had gone to bed. The abdomenal spread to me explained the pressure I had been feeling in the abdomen -- a side effect is that fluid collects near the tumors or something. But overall, my outlook does not look good. Angie decided to join me for my visit with Dr. Amatruda earlier today. She had questions about what to expect.

Dr. Tom reiterated much of the above and went into further details where necessary. But much of what turned into a pretty long office visit involved my future and outlook. The short version: six months might be on the long side of my expected remaining life.

I elected to give one more form of chemo a shot for the off chance that it does something, maybe just buying me a little more time to see my happy little Heather. Temazolamide is the name, and pill form is the game. It's not supposed to be as harsh as the intravenous stuff, and we're not really expecting any great results, but I'll give it a try.

Mostly it looks like my future will be continued deterioration as the cancer spreads. I will grow weaker and need to think about giving up work. And look into ways to stay comfortable and control the pain. We talked about things to do in regard to work, insurance, considering eventual hospice care, and such like that. Not exactly uplifting, but it was a necessary exercise.

Thank you for all of your thoughts and prayers that have helped bring me along months past the typical expectation of 9 months from diagnosis: I've beaten that. And I enjoy every extra smile from Heather, every little laugh from Angie, and all the smiles that have come to me from jokes and stories from life. Short of a miracle though -- and I'll take one if it comes along -- I probably won't be ringing in 2011 with you.

Tuesday, January 12, 2010

More Chemo After Christmas

I had been scheduled for chemo on Monday the 28th. I had called to see if I could move it, and there was no problem with that. So the day after we got back, I had to go in for another infusion. I already wasn't feeling great, and this didn't help. And Angie was in such a furious hurry to clean the house, that my Tuesday did not start all that well.

I went in to work a bit on Wednesday and Thursday, but I didn't get a great deal accomplished. I also began having more issues with nosebleeds after this last bit of chemo. It's partly the dry weather, and partly that the Avastin makes it more likely. But again coupled with my post-nasal drip, it makes for yet another less than comfortable way to wake up in the mornings.

My appetite seemed to come back. A tale I have been telling is that one day at work I had one of my old favorite tuna melt combos from Davanni's. Back before all the cancer, that was about enough to fill me up with just the "half" sandwich. But afterwards I felt I could have gotten the "full" version with 2 6-inch sandwiches. So I did just that the next day. And I still hit the vending machine for a candy bar that afternoon.

With this appetite, I was hoping to get back some of that weight I'd lost last fall. I had dropped from 145ish to just under 130 pounds. I'm not sure when: during the 4th embolization or so. But even though I had the appetite, I'd end up feeling very full -- almost uncomfortably so -- after eating big. So I could only do that about once a day. But I was happy to be eating.

Noel did us a great favor and inspected and found a fix for our dryer. This comes as great comfort to Angie who has been continuing her post-Christmas, post-Brooke cleaning. The tree and decorations came down pretty quickly. But she couldn't help but do many loads of laundry, dryer or not.

I had the 3rd and last infusion of chemo for this latest round on January 4th. They generally take a blood sample beforehand, and this time my numbers came in too low. This meant that I couldn't get the Taxol, but that they would give me the Avastin. I was wondering if the low numbers were an explanation for why I've had little energy these day. I'm still not entirely sure.

I was scheduled for a PET/CT following the round of chemo, and I had that scan done on the 7th. I meet with Dr. Amatruday tomorrow to discuss the results. But his nurse Michelle called today to give me a bit of advance notce of them, so I could think about them beforehand to ask questions. I don't mean to keep anyone in suspense, but I'll wait until after my appointment tomorrow to mention my current status. I will update this post, so check here again to find out.

Update: I changed my mind -- the update is a post of its own.

Chemo and Christmas, Part 2

I left off as we had gotten to Bismarck on the night of of December 22. I was really worn out, but Angie still had to unload everything of Brooke's at her dad's. I don't think I could have helped if I'd wanted to, though.

On the 23rd, I woke up late-ish to get Heather some breakfast, but was still pretty tired. I didn't do much, and maybe caught a brief nap, but I needed to make one last shopping stop to Best Buy with Michael. Thankfully, that went very quickly.

I don't know that I really did a whole heckuva lot the rest of the day. Mom had to work, and I think I tried to work on "my chores" that get saved up for when I visit: fix up a couple of things with her computer, I put some plastic on a window, looked into issues with on of her TVs, and tried to figure out what is wrong with her phones.

It seems to me that Karen was making her delicious version of Mom's chocolate- and butterscotch-chip cookies. And I'm pretty sure I grabbed a few before they had cooled. And I tried my best to make and join conversations. But again I was pretty worn out, and was having an issue with shoulder and back pains.

It dawned on me that while my prescription of percocet would be just fine were I at home, being out of town threw a bit of a wrench in the works: with Friday being Christmas, I needed to call the clinic to see if I could get a new prescription pronto. Unfortunately, it's a controlled substance, so I have to pick up the prescriptions in person. After talking with Dr. Amatruda's nurse Michelle, I decided to try to minimize taking the percocets, and as a backup to try some of the 20mg oxycontins.

Ya see, normally 30 percocets can go a long way. But if I take two at a time at four hour intervals (say 3 times in a day) for 5 days, I'd be running out on Sunday night when we would be getting home. I didn't count 'em, but 30 seemed like a good guess of what I had left. Going by onesies and overlapping them a bit, I was taking about 5 per day, I think. But that wasn't really giving me much relief.

Angie spent much of the day visiting. I think her sister Darcy was going to be out of town after Christmas Eve, so that was one of the places she stopped. For Christmas Eve, Angie went to her folks' dinner and gift opening. I was still not up to leaving the house. But Dan came over to visit me at Mom's, which I appreciated.

Angie was done with her dinner and gift opening early enough that our gift opening and Mom's was not really affected much. With some well-timed percocets, I was feeling good after 10pm, so I trailed behind Mom and Karen, Michael, and James who had gone next door to Barb & Andy's. I had a pretty good visit over there and enjoyed many good snacks. Although I don't think I lasted an hour, it was very nice to get out of the house and visit with Bonnie and everybody over there.



Christmas day came with a lot of snow. I began to worry about the drive home -- we were planning to leave on Sunday. But the snow kept coming and coming. And I was still not feeling great, the old "worn out and tired" was getting old; the pain was becoming a pain. I was still rationing my percocets, especially since I was now thinking about leaving Monday instead.

I did my best to try to keep up with conversations and be sociable, but many moments found me sitting in front of Mom's computer in what was my original bedroom. It had become my place to try to weather the pain while waiting for the meds to kick in. I just couldn't sit still and carry on a conversation in the living room or kitchen as much as I'd try. There was certainly nothing more comfortable for a chair in that room, but the little 30-second distractions on the monitor kept my mind off of how I felt. And when I was starting to feel better I'd make my way back out to where people were. Late at night, I had a good talk with Michael and James, and we were later joined by Karen. Time marched on past midnight, but it was good to talk.

On Saturday I enjoyed a happy helping of leftover turkey and gravy and taters -- which Karen had fixed so well for Christmas dinner the day before. By no fault of the food, I had some kind of stomach issue later that day. I fell asleep watching some football, but I was really just feeling about the worst I'd felt the whole time. I mostly slept much of the evening, too, and eventually my stomach caught up with me.

I had been hoping to pack up on Saturday, but I could not bring myself to do it with all of the nausea. Since we really weren't packed up to be ready to go first thing Sunday morning, and given the still-snowy weather, we wouldn't be heading out on Sunday.

We did get to most of the packing on Sunday, and I was feeling better after the prior night's purge. We also had the opportunity to do more visiting. Angie was all over town visiting people all week. For me it was just taking the time to talk to Michael, James, Karen, and Mom. Which probably worked well for both of us.

Monday we headed out, Michael driving solo so I could play disk jockey for Heather in the back of Angie's Trailblazer. The roads were damn good considering the blizzard that had just blown through. We got back in time to watch the Vikings on Monday Night Football. Unfortunately, that close game ended in a Minnesota loss. I took Michael to the airport after the game: he had his flight back to Seattle early on Tuesday morning.