Status Update

Bumping that 4th C-E by 2 weeks messed up other scheduled scans and appointments a bit. My followup MRI was eventually moved to Oct 14th. Dr. Close, the doctor who performed the embolizations, wanted to meet with me that same day to discuss the results.

I was done with the MRI a little after 9, and Angie wanted to be there for the consultation with Dr. Close. It's usually a 10-minute drive from home to Suburban Imaging, so I thought I had plenty of time to get Angie and return by the appointment time of 10. As it turned out, I pushed it a little too close and Angie was still asleep when I got home. She arrived separately in time to meet with Dr. Close, but needed to bring Heather with her.

Dr. Close showed that the tumors in my liver were shrinking, which was good news. But the fourth C-E also ended up producing a fair amount of infarction in the right lobe. This means that normal, healthy liver got killed as well. On its own this isn't terrible -- it will regenerate.

But somewhere in this time I had gotten a fever that went to about 102.5. Shortly after the C-E procedures, I am supposed to go to the ER if I get to 100.5. But this was four weeks later. I started monitoring the fever a little more closely prior to the 102.5, and when it got there, I called Minnesota Oncology. Of course I was told to go to the ER.

In the ER they took some blood to check for the flu, since that had started popping up about that time, but the cultures turned out negative. I don't remember the time frame all that well, but the upshot is that I ended up monitoring my temperature a lot more frequently. And I was able to discern activities that tended to increase my odds of bumping up a fever. I kept the fever business in check, but it took until just recently to really seem to break it. I think the fever has been a response to the infarction.

Again, I forget a bit the order of events, but I think the fever was before meeting with Dr. Close. Near the end of the visit, Angie had to tend to Heather, so I was by myself when I left Dr. Close's office. He left me with the impression that there was more information forthcoming, and asked me to call later in the day.

When I called, Dr. Close said that in the MRI he thought he had seen indication of the cancer spreading to bone, to my ribs. I had already been trying to schedule another PET/CT to get the "big picture" on where things might have spread. This news left me with something to expect regarding that scan.

I had the PET/CT on the 23rd, and today when I met with Dr. Amatruda I got those results. He informed me that the results showed that I have metastasis on 2nd(?) thoracic vertebra(?). I was fairly distracted during much of the rest of the visit, dwelling on this result. I boiled things down a couple of times: "If we hadn't had the progression to the bone, if it was just the liver tumors shrinking, it would have been a good news day, right?" "Yes." And, "I'd heard that when it gets to the bone, that's pretty much it." "Well, with melanoma it's not all that different from tumors on the liver." I found this comforting in its own way.

Regarding the progression to the verterbra, Dr. Tom examined me a bit. I haven't really had any pain in my back that I thought was of notice. Given this, he was leaning against using radiation to treat this, but it is something he will consider with the radiation treatment folks.

I was finally able to focus a bit as Dr. Amatruda again presented my treatment options.

• Experimental: Sorafenib + Torrisel vs Sorafenib + Tipifurnib
• Avastin
• Temozolomide
• IL-2

We're going to check on my eligibility for the experimental treatment or Avastin, my first and second choices, and then go from there. Wel'll see where things go.

But I've been feeling fairly good lately. Thankfully the pain after this 4th C-E hasn't been as bad as the 3rd. Still, it has been a pretty long recovery time. The fevers and infarction complicated things a bit. My appetite was not very keen much of the time since #4, but I think things are returning to a normal. Yesterday I had 3 meals and had a fairly productive full day at work.

So that's about where things stand.

The Halloween Hall 'O Fame

I'd like to watch this with Heather. I packaged up the 5 videos I found here.

Disney Halloween Special from 1977 starring comedian Jonathan Winters.

Build your own custom video playlist at embedr.com

Heather got a bit scared by that last one.

Dad

In late July, Dad took a turn for the worse from what he had been like earlier when we had visited. His "Mr. Hyde" personality reared itself in a bad way on some doctor's visit, and since then he had pretty much been under 24-hour care. And he pretty much continued to go downhill from there, with only brief moments where the Dad we've known and loved all our lives was still with us for a smile or an attempt to put one on Mom's face.

Dad passed away Sunday evening. I have been praying for angels to be by his side to remind his spirit that he was loved by many. And I have hoped and prayed for relief from his suffering, Alzheimer's is such a cruel disease. It has been hard to watch him lose his mind. I am not relieved that he is gone, but it does give my sadness pause when I think of him in the grace of our Lord with his suffering now ended.


I was trying to write something here when I started this post on the 12th, and later I wrote 5 pages of something -- paper and pen -- on the drive back to Bismarck for the funeral. But the obituary that Mom wrote it much better, so I'll instead quote it in its entirety:

Donald Sinkula

Donald “Sinkie” Sinkula, 79, Bismarck, died October 11, 2009, at Marian Manor Health Care Center, Glen Ullin. Services will be held at 10:00 am Saturday at Parkway Funeral Service Chapel, 2330 Tyler Parkway, Bismarck, with Rev. Paul Becker officiating. Burial will be held in Sunset Memorial Gardens, Bismarck.

Visitation will be held from 3:00 pm until 9:00 pm Friday at Parkway Funeral Service, Bismarck.

Donald was born on December 8, 1929, in Mandan, ND, to Margaret Zingsheim and Anton J. Sinkula. He lived in Mandan, graduating in 1947. He worked for Bingenheimer Mercantile during high school. Donald enlisted in the Navy as a hospital corpsman, and was honorably discharged in 1949. He returned to Mandan to work for Bingenheimer’s where his interest in woodworking became his hobby as well, building for family and friends; furniture, a screen house for his children, and his own garage.

Donald was united in marriage to Lillian Maye Ruud on January 24, 1959, at St. Mary’s Church in Bismarck with Monsignor Feehan officiating. They celebrated their 50^th anniversary this year. Their marriage was blessed with two children, Karen and David.

In 1967, the family moved to Bismarck, where Donald accepted a job as Postal Clerk with the US Post Office and retired after 25 years. Collecting steins was a favorite hobby with themes of Space, Olympics, Sports, etc. ballooning to over 100.

Donald enjoyed spending summers at the trailer in Happy Acres at Pick City, being a neighbor with many friends from Bismarck-Mandan, as well as gardening. He was a sponsor in building the VFW Sports Center Arena in Bismarck, and supported the Musicians Association Band Shell in Mandan.

Donald was a 54 year member of Bismarck-Mandan Elks Lodge, a 38 year member of the Fraternal Order of Eagles, member of Amvets, and the Disabled American Veterans.

He is survived by his wife, Lillian (Maye); his daughter, Karen Truong and grandsons, Michael and James of Seattle; his son, David and his wife, Angie and granddaughter, Heather of Coon Rapids, MN, and many nieces, nephews, and cousins.

He was preceded in death by his mother, Margaret; his father, Anton; his sisters, Margaret, Marcella, Martha, Dolores, Florence, Loretta, and Mary; and his brothers, John, Tony, James, Joe and Francis.

Memorials may be given to Camp Grassick through the Elks Foundation in Bismarck, the Central Dakota Humane Society in Mandan, or a memorial of your choice.

We will miss you Dad.

Already I Get Out of the Update Habit

Monday and Tuesday were a lot like Sunday, I guess. I didn't go to work and wasn't really feeling all that great. Wednesday, however felt pretty good.

I was feeling a bit better toward Tuesday night. And then I'd gotten a pretty fair night's sleep . I was thinking I'd finally be ready to go to work on Wednesday. When I woke up about 7:30 I was still feeling pretty good, but tired. So I snoozed a bit more. When I got up at 9, though, my stomach was rather upset. After dealing with that for a while, I went back to bed to lie down for a while.

I started heading into work about noon, thinking that I'd last a couple hours. But I was feeling pretty good there and getting quite a bit done. So I stayed until about 6. I was still in "work mode", so I kept working on a copy of things on my USB drive. I wasn't all that tired, and didn't really have pain out of "the ordinary", so I put in some good time on work stuff. I went to bed a bit after 1am.

This morning I thought and hoped would be much like yesterday, but things soured early and stayed that way. A "new" pain for me was a pain in the side -- perhaps the liver is not projecting all that far away . It kinda felt like I'd been kicked in the ribs on my right side. This didn't get any better during the day, and in fact got worse -- even trying to chase it away with some vicodin. Although I'd gotten in earlier this morning, by 3 o'clock I'd had enough.

I came home, took some percocet, and went right to bed. And I've pretty much been here since. The percocets weren't working by themselves, so I had to add an oxycontin. That is finally taking the sharpness out of the pain. I've still got a duller pain in that area, but it doesn't keep be so completely doubled over like it had done earlier today.

Maybe I just bit off more than my body could chew yesterday and today. Well, at least I've made some good progress with some of the things for work. But tomorrow I'll be playing it by ear a bit more -- and I'll probably be more willing to throw in the towel at an earlier stage.

First Day of School!

The Tuesday after Labor Day was most certainly one out of the ordinary. Brooke started high school, and Heather had her first day of kindergarten! (I even managed to go to work for the first "normal" day in a while!)

Heather was very excited, and Angie was a bit overwhelmed as well. I managed to get a few pictures of Heather on this big morning.



Angie called me later and told me how she didn't want to leave Heather at the school, and how she cried for a bit. Our girls are just growing up too fast, I guess. It doesn't seem like it in the day-to-day, but when a big day like this comes along, I suppose all the emotion comes out.

Rough Night

Last night ended up being a nice little reminder of the way I'd felt after #3. I think it started with an upset stomach (at least that's how it felt to me). The mac & cheese that Brooke made was the last thing that seemed to sit well with me. After that, I was all screwed up.

The Diet Dew, Gatorade, or even cold water just seemed to sit on top and aggrevate my stomach, which really did turn into a pretty good belly ache on its own. When I'd try to take my meds "on schedule", they didn't seem to do their normal thing through my messed up stomach. So as the night wore on, I got the shoulder pain returning more intensely. And it spread to other parts of my back as well. And for some reason, the backs of my upper arms were sore too. I think I might be rubbing more muscles than I'm thinking about and maybe that was in turn getting a little sore.

Anyways, sleep escaped me for most of the night. My night was familiar, like the ones in early August, in which I was rather tired -- drained -- but had enough pains in the shoulder or belly to keep me uncomfortable. And being uncomfortable kept me moving around in search or some kind of a comfortable position. I think I may have nodded off for a half hour or so on the couch during one stop. After I woke up from that, about 6:30 am, I took some more meds and went back to bed.

Heather was up about 7:30 and wanted to watch TV, but I asked her to go back to bed for a little bit. I woke up about 9 to find her quietly building a fort for her stuffed animals at the foot of the bed. I turned on the TV for her and wandered about in search of some pain relief. It didn't really go so well. I tried to watch some pre-game and some football, but that wasn't going so well either.

Brooke had made a frozen pizza about 1ish; I came downstairs a bit later and reheated some. I was very hesitant, but so far following Brooke's lead had worked for me, so I gave a couple slices a try. It was rough getting them down, because the belly ache was still with me. And maybe a half hour or so later it was time for some meds again. Now this time apparently my ducks were in a row. It was tough on my stomach at first, but it finally sat well and the meds began to work more as I hope and expect them to.

So by about 4 I was finally getting rid of the belly ache and the shoulder and back pains. Finally some relief! And then I was extremely drained of all energy, but I hadn't really been able to fall asleep. And so for the moment I'm feeling fairly pain-free and tired, drained. But it's definitely an improvement. Unfortunately, I'll probably need to eat something soon. I hope I don't repeat this little cycle of the past day.

Good To Be Home

If definitely feels far more comfortable to be at home. And now I'm adjusting to what it's like being out of the hospital. No real surprises, much the same as it's been before.

The pain is returning. This time it seems to mostly be projected into my right shoulder. If you've ever been to a chiropractor and he's dug his elbow down into the muscle on your shoulder, that's a pretty good approximation. Except that it goes on for a period of a half hour or maybe two hours, depending on when and to what extent the meds smooth things out.

So far, the old regiment seems to work about like it did before. But that still means that hour or whatever in which I just have the pain and kind of writhe and shake and try to find distractions such as Facebook games to keep me distracted. Or just wandering about. In its own way, I guess I get used to it, but it's not a lot of fun. Maybe a bath will help out too. To me it seems that even though the pain is projected from the liver, treating the symptom of rubbing my shoulder or whatever seems to make it go away. So that helps.

I haven't been able to sleep all that much. Maybe an hour and a half early last night, another hour and a half on the couch for a while. This morning I think I caught another half hour or so. And there have been a couple of times when I've just been able to roll over a bit and relax enough "watching" TV in the bedroom that I've been half asleep.

Food is staying down better today. Brooke made some mac & cheese that hit the spot. But I'm still covering the lion's share with yogurt, Little Debbie's Snack Cakes. Maybe some pudding later.

It seems like a lot of waiting that I do, though. Waiting for the meds to kick in. I seem to do a lot of waiting.