Chemo and Christmas, Part 1

My last infusion of Round 1 of the latest attempt at chemotherapy, this time with Avastin, was on the 4th of December. Just prior to that, on the 1st, I had an office visit with Dr. Amatruda. I was almost set to throw in the towel on this latest bit of chemo, but before I got to it, he had talked me into continuing at least a second round and then seeing what a scan might show us. I did my best to schedule this second round to straddle Christmas in hopes of making the best of the time. My first trip to the Chair of Lengthy Naps was on Dec. 21.

Brooke, now 15, has issues. Lots and lots of issues. But something made her decide that she hates Coon Rapids High School and the only solution was to give up on it. Her behavior around here has been, to put it nicely, not all that stress-free for either Angie or me. So her choice to try school back in Mandan and return to living with her dad was agreed upon. But we had one last chaotic weekend before loading her up for our journey to Bismarck for Christmas.

My nephew Michael chose to fly round-trip from Seattle to Minneapolis, and to join us when we went to Bismarck. At first we weren't sure how to go about this, as 5 people and all the stuff in just Angie's Trailblazer would have been a tight pack. But since the summer Angie had wanted me to take my pickup to Bismarck so we could return a day bed back to Angie's folks (another story involving Brooke, wouldn't you know). So the idea hit me that perhaps Michael could drive the Silverado with the bed and other things now that Brooke would be taking back.

Michael got in on Friday the 18th and spent the weekend with us here. On Monday he took me to and picked me up from my chemo appointment. And then things got a little rough for me. We needed to pack up the truck to head out on Tuesday. I'm generally worn out and try to rest after chemo, but this wasn't really an option this time. We got the bed loaded on my truck and started packing the Trailblazer. I thought Brooke had brought all of her bags downstairs, and it didn't look too bad. We all needed rest, and tried to hit the hay at a reasonable hour to start the next day.

And then Tuesday came. Brooke had more and more and more things in her room; it was like a clown car when final loading time came. So packing everything in took a lot more time than expected and more work than I was physically ready to handle. And when we were finally packed up, at a late-starting time of about 10am -- nearly guaranteeing that we would not get to Bismarck in daylight -- Angie couldn't start her Trailblazer. The battery was dead.

We managed to get if jump-started, but Angie was about ready to go through the roof. She wanted a new battery on the spot. I really couldn't argue given what had happened, and that her "car" (as I still call it) is now over 5 years old and has a lot of accessories inside. Plus I was in no shape to argue with Angie; standing was almost becoming an issue.

We went to Pep Boys and got a new battery installed. And I think we were finally able to head out of town about noon. I went with Michael in my truck and we followed Angie and the girls. There was a bit of soap opera drama going on in all of this as well, but this post is looking like it will be long enough already.

We made it to Bismarck fine but a bit late in the evening. I was very worn out, though.

Quite the Eventful Day

Thursday the 9th of December started out a fairly normal day. Angie had to open at the Zimmerman store, Brooke went to school, and I started my day getting Heather ready for school. Heather had had a bit of a cough for several days, but never had a fever and seemed fine otherwise. It was cold that day, and I couldn't find Heather's backpack, so I dropped her off closer to school and walked her in so I could tell her teacher she was missing anything that she might need in the backpack.

I had a bit of an appetite, and I wasn't going to pass on this increasingly rare condition, so I had some lunch about 12:30. I was surprised to hear Angie come in a few minutes later. To me it is a given not to call or in any way assume anything other than the fact that Angie is very busy during lunch hour when she is working. So I was not expecting her until closer to 2:00.

She had gone to work at the new Zimmerman, MN Hardee's greatly in part to the fact that she wanted to work with Barb. Barb was the manager of the Elk River store that Angie had most recently worked at. I was never very keen about Zimmerman because it was almost twice as far as Elk River that I already thought was a bit far.

Well, Angie had a story to tell about her day, but the short version is that Barb to "promoted" to a position in which she would not be managing the Zimmerman store. Needless to say, Angie was pretty upset. She has had issues with some of the other people, and at 3am I imagine the drive suddenly did not seem as short as it once might have. Really the only thing that was keeping her tolerant of working in Zimmerman was Barb. She told the new manager that she was going home and said she didn't care to work there anymore. It was sort of an ultimatum: she'd work in the Anoka store, but not Elk River nor Zimmerman; if that didn't work, she would be quitting.

After listening to the tale, I went back upstairs to continue working from home. Angie left the house about 3:40 to pick up Heather. About 3:55, I got a call from the school: they said Heather was puking and we'd need to pick her up from the nurse's office. I called Angie to let her know. And in the meantime, I scheduled an appointment for after-hours care, which wouldn't be until 7:00.

When Heather got home, she looked like heck. We took her temperature, but she wasn't above 100. But not even an hour later, I checked again and she was over 102. So the two of them packed up and went to the ER. I am not really supposed to be around sick people during chemo, so a hospital isn't the best place -- well, the waiting room at least. Besides, I needed to wait until Brooke got home from wherever. She had skipped coming home right after school like she is supposed to, and I had little idea where she was or how to find her (she has a way of making this the case).

As I waited, I tried calling Angie a couple of times. I knew that her phone needed to be off in the ER, but it's tough just waiting. Angie was able to sneak a quick call and gave me an update. I could even hear in the background that Heather sounded better after they were able to get her fever down. But she had pneumonia and they would be admitting her to the hospital.

Angie called several more times with updates, from the ER, from the room they were admitted to, and kept me up to date. During this time, I was still waiting for Brooke. And I was deciding that if we had flu?/pneumonia in the house, with me on chemo, and having just few out-of-the-ordinary (for me) coughs and a tightness in my chest, I figured I'd probably want to get myself checked as well.

And I waited and I waited and I waited for Brooke to get home. She was supposed to be home by 9:00, but I hadn't seen her by then. It was finally about 9:30 that she was making something in the kitchen that she made her presence known. She insisted she was home by 9:00 but went right downstairs. Sneaking out, skeaking in, she is never easy. Loud all the rest of the time, but not when I need it.

Well, I grabbed a bag with some things for Angie and quickly headed out the door. I stopped at McDonald's and grabbed Angie something to eat on the way. I came up to visit Heather fairly briefly and drop things off. She looked like she was doing a lot better. But apparently she was still having a hard time keeping food down.

Then I went to the ER. There wasn't a line, so things went somewhat quickly. But it was still a lot of waiting for test results. Blood draw and wait for the result. Chest Xray and wait for the result. They didn't find any pneumonia or flu, so that was good. But something in the results made them look for a possible blood clot in the lungs. I think one of the chemicals in my chemo has some clotting behavior to it. So they also got me in for a CT. Eventually, they ruled me pretty much okay, maybe with some bronchitis.

I visited Heather and Angie again briefly before leaving, but it was already 1am. They still looked pretty good, although trying to rest and not all that comfortable. I stopped at Walgreen's on the way home to fill my prescription, and in my wait time went for a quick look for something to eat. The only place open at that hour was White Castle. Not what I'd hoped for, since I hadn't eaten since lunch, I was damn hungry.

I got home a bit after 1:30. And I was disappointed with Brooke for being up downstairs and later discovering that one of the first things she did after I left was go into our room and grab Angie's laptop (which she is suppposed to ask permission for before every time she uses it). She has a way with taking these little opportunities to impress us with her maturity and failing rather miserably.

Friday morning I was scheduled to go to the clinic for lab work (meaning a blood draw). I didn't sleep well, and I was up by 7am, even though after trying to unwind I hadn't gone to sleep until after 3am. Well, I needed to let work know that I'd be doing my best to work from home. And I tried to call the clinic and see if I could skip out on the blood work -- if they could use last night's results from the ER.

I did skip it, my callback didn't come until 9:20, and I was scheduled to be there at 9:20. But Dr. Amatruda's nurse let me know that I didn't need to come in and that they could use the ER results. Or if anything, for me just to stay home and rest and if they need a different test that they'd call me back for Monday.

But in the process of discussing blood and test results, she let me know that the tumor on the 2nd thorasic had grown. And that a new one was spotted on the 12th. And, as a later call from the radiologists also mentioned, that there might be some cancer in my lung, but that they thought it was most likely mucus.

Later, Angie had called to let me know how Heather was doing. She also let me know that the school called and said the Brooke had some injury to her hand and that Angie needed to come pick her up. Angie was not happy about that, and looking at Brooke's hand later we had no idea why she needed to be taken out of school.

I was having a bit of a time trying to work, and had fallen asleep around noon or so. I missed my Friday call with my manager and felt pretty bad about it. Later I did call a co-worker about the software we're working with, but he pretty much tabled things until Monday.

Heather was released from the hospital in the afternoon. Brooke was of course grounded for not coming home after school the day before. So of course when Angie went to pick up some prescriptions, Brooke left and left a note saying she'd be back about 9. I had been upstairs and Heather was watching TV downstairs when Angie left (apparently followed by Brooke). It sounded "too quiet" downstairs, so I went to check it out and learned this situation. Again we were more than a bit unimpressed with Brooke.

But Heather seemed to be doing all right, and she kept herself fairly well entertained. I did my best to keep a sharp ear for her from the upstairs as I tried to simultaneously "kept an eye" on her while trying to keep my distance because of the chemo and the reduced immunity.

All in all, it was quite the eventful 24-hour period. Frankly, I prefer a less exciting routine.

Thanksgiving 2009

I was able to enjoy a very nice Thanksgiving dinner here, and my stomach was nice enough to cooperate. Angie had to do pretty much all the work, but she did a wonderful job. I think I only helped near the end with taking the turkey out of the roaster and carving it.

And the day after Thanksgiving I had my next bit of chemo. While I was doing that, Heather visited Santa. She enjoyed it a lot.

Heather wanted to get the Christmas tree up right away, and I wanted to as well, but I didn't have it in me yet on Thanksgiving weekend. Later in the week, I was finally able to summon some energy. But I only got the tree together before I was pooped. Heather and Mandy put decorations on in the meantime. I told Heather I'd need to take them off to put on the lights and the garland, but the didn't bother Heather at all. She just got to decorate the tree twice!

I went for the last injection of this round on Friday the 4th. Angie had to work that morning, so Noel gave me a ride to the clinic and back. I had an issue with my sink in the upstairs bathroom, and I imposed on him for a little help with it. We took a quick look and then ran to Menard's and back. I bought the part, but Noel did the install and I owe him much thanks for that.

During the time I was keeping him, he had mentioned that he was going to lunch at a nearby Chinese buffet. Now I'm normally not one to get my money's worth at a buffet, even before any of this chemo stuff, so he knew I wasn't interested. But I felt hungry, and I hadn't done much outside the house, so although it probably sounds like something quite inconsequential, I asked if I could come with.

I'll be darned if I couldn't put back my money's worth at the buffet. Really! Ask Noel. I thought I'd sneak in front and pay for Noel's lunch for all he had helped me with that day. I whipped out the card ... and was told "cash or check" only. I felt about three inches tall. Tony, who we were lunching with, picked up the whole tab. So another thank-you to Tony.

The New Round of Chemo

Let's see, when we last left off, I had just had a wonderful time dealing with the nausea from my latest start of chemo. I think it was about the Monday or Tuesday after this first bit of chemo that I noticed my temperature being a little bit high. I tried my usual methods to see if it was of any concern -- usually having a smoke in the garage cools me down from a warm upstairs and I get a more accurate reading. But I was still above my 100.5: during chemo, this is the temperature at which they tell me to call in. Well, if I call in, I know they're just going to tell me to go to the ER, so I second guessed it for a while and tried to shed some clothes and what-not.

It didn't work. When I'd read 102.something I knew it was going to be another trip to the ER. Angie got the girls fed and then we all went to get me checked out. Of course it takes a while, a wait I'm sort of getting used to. After triage (I had already taken some ibuprofen or tylenol and beaten them to that part) I got a room. And they came for blood. It must have been flu season because I gave a little extra for some flu cultures. Yada yada, I forget, temperature down, prescription for Tamiflu or something and I was released. Your typical 3-4 hour ER visit when things are pretty much okay.

And things stayed okay. I was able to enjoy a very nice Thanksgiving dinner here, and my stomach was nice enough to cooperate. Angie had to do pretty much all the work, but she did a wonderful job. I think I only helped near the end with taking the turkey out of the roaster and carving it.

And the day after Thanksgiving I had my next bit of chemo. This one was a quicker push, and it seemed like I barely started by Benadryl nap and it was all over. I haven't had the greatest experience this time around. I've been visited by the nausea that I didn't have with the chemo this spring. And I seem to have been more tired and had more body aches. I was considering throwing in the towel on this latest attempt. I asked Angie what she thought, and she felt much the same.

But I brought all the info/feedback I had, good and mostly bad, and went to see Dr. Amatruda on Tuesday, Dec. 1. We discussed the many things we have to talk about. But even before I'd said I was thinking of taking a pass -- maybe he could sense it -- he explained that they prefer to go two rounds and then scan to see the results. A "round" in this case being the series of three injections. I decided to try my best to see it through. I figure I've always got a trump card that I can just say "enough" at any given time things get to be too much.

We scheduled up the next round, and I managed to straddle Christmas a bit. I'll have chemo on the 21st and 28th, and cross my fingers that in between I'm good enough for the trip to Bismarck and back for Christmas at Mom's.

And so I went for the last injection of this round on that Friday the 4th. I don't feel great. I spend a lot of time in bed and surfing the net. I am able to get some work done, too, and have been spending more time working from home. My new work PC connects with my home wireless whereas my old PC didn't, so it's been a bit easier.

Funeral Preparations

I just want to post this to make this available to those it may eventually concern. I had some of it on paper, but I wanted the online version for the links, and easier access to everybody, and easier editing, and so I'd remember where it's at, and such like that.

I would like to use the same funeral home as Dad, which would be Eastgate and Parkway Funeral Service (contact info, Eastgate: 701-223-7322, Parkway: 701-223-1100). In particular, it was the Parkway location that was used for Dad. That would be fine by me, but the Eastgate location would work just as well if not possibly better.


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I haven't worked out details with Eastgate at this time. But I did inquire about what might need to be done if I die in Minnesota. I was told that my remains would need to be handled locally first, but that they could do the service and such much like what we saw with Dad.

I contacted a local place, Gearheart Anoka Funeral Home, (763) 421-4347, and asked a few questions.


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I think the minimum of what would need to be done here is the following.

• Removal of remains, $395
• Embalming, $995

This is not everything, but a basic start. We wouldn't need to have a casket for my transportation, but I may look into caskets here. Then again, I don't know if I'll die here, so there would be a delivery issue perhaps.

The 'removal of remains' is the handling of my body after I'm dead. That is, retrieving it from wherever it lies and taking it back for embalming and what-not. I would need to be embalmed before being transported to Bismarck, but that need not involve a casket (there is a 'funeral cot' or something).

There is also a mileage charge for moving my remains to Bismarck from the Anoka funeral home. And then there are many things, it would seem, that would be charged for the rest of the funceral handling at Parkway/Eastgate in Bismarck. This could include the casket if I haven't gotten one by then. And the funeral service, whatever extras, transporting me to the cemetery.

If there is to be any church involvement, I would choose Corpus Christi. Father Becker, I guess, we would need to contact: 255-4600 (ext. 203). Also, possibly Sister Ivo Schoch, 255-3104 (ext. 208).

One last item of mention is a potential list of pall bearers: Michael Truong, James Truong, Dan Johnson, Noel Wareham, Harley Schwind, Marv Olson.

We already have the burial plot at Fairview Cemetery, (701) 223-1947, but I don't know what might need to be done for digging or whatever. It might be something that is coordinated out of the funeral home, so we'd need to call either Fairview or Eastgate/Parkway. Our location is Plat No. 12, Lot 31, Grave Nos. 15A & 15B; I believe I go in the 'B'.

You're Not Going to Find the Result Until You Give Something a Try

After that last scan turned up that the cancer had spread, Dr. Amatruda and I discussed what to try next. I wasn't exligible for the "Experimental: Sorafenib + Torrisel vs Sorafenib + Tipifurnib". So next we went shootin' for the Avastin.

I ran into problems with the Avastin: it has been approved for use with some cancers, but not yet (or at least not as far as insurance is concerned) for melanoma. So I applied with the company that makes it for some kind of subsidy or something. Whatever the case, I got the okay to use a drug of this type in with the other chemo drugs (Taxol, other?). In question, however, is whether or not the insurance will cover the infusion. If they do or don't, the infusion charge is a couple hundred bucks. (I tell ya, even if it's my own head, I'm starting to consider costs versus probability of a benefit here.)

So anyway, it took quite a while for the clinic people to go back-and-forth with the insurance company to get to that point. And when it was time to choose, I said let's give it a shot. I got that call from them Wednesday, and we set up the appointment for this morning.

So I had my 5-hour drip and it went much like it had in spring: the Benadryl made me sleep through most of it, until the saline caught up to me near the end and I needed to take a leak. In the past I hadn't had trouble with nausea, so I opted to "skip" the prescription meds. As I found out later in the evening, and not long ago, this wasn't a good guess.

All those years of drinking to excess at least taught me to at least recognize when the stomach has won and it's time to quit fighting it -- and in doing so I don't end up feeling completely terrible afterwards. Around 7pm I went downstairs to tell Angie that I'd changed my mind on getting the prescription anti-nausea meds (which we had called in anyway as a "just in case" measure; if I didn't feel the need, I just wouldn't pick them up). I no sooner finished asking her to go to Walgreen's than demonstrated the need for these meds.

Since the college days I've had issues with post nasal drip. It happens to be worse in the cold months, so it has been a bother lately. What happens with me (sorry about being graphic, but such is my life these days) is that it ends up gagging me. It gets to the point where what it does is similar to causing me to vomit, but to me it is not quite the same. Well, this plus the chemo is not a good combination for me.

So the latter half of the day hasn't been all that fun. I'll have chemo next Friday and the Friday following (days 1, 8, 15 according to their naming scheme). It won't be the same cocktail each time, so the one the day after Thanksgiving will be shorter. After the 3 I suppose I'll have a scan and then discuss the results with Dr. Tom again. We'll either find out that it works and keeps the tumors from growing, or we'll find out other new bad news, I suppose.

Angie seems to view me as being in more pain or discomfort than I think I have. So before I started this she had asked why I was starting this if I really wasn't back to "normal". It's a tough question for me to answer because we view things from almost completely opposite perspectives. She wants to think that I'll be around for 5-10 years and focuses on that, and that in between I should have some periods of the old normal. My view is to set goals of making it to Thanksgiving, Christmas, my birthday; I need to see myself hitting goals regularly, and how I feel day-by-day is what it is.

Anyways, my answer about why I'm trying this, and why now, is because I want to try to keep it from growing. And even if I don't feel like I did two years ago before any of this started, to me I've been feeling good enough. I'm not going to know how it turns out until I try. I might be making some wrong choices. But to me I'm trying to put a hold on the cancer and keep my health, imperfect as it may be, as "good" as it is now. I guess I'm thinking that things could end up a lot worse. I guess we'll see.

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.

Back Home from C-E IV

I had what should hopefully be the last C-E of the series on Thursday, if all went well. No, I don't know the results yet.

We've been doing right-left-scan, and intended to do right-left-scan again, but the previous scan showed that the chemo used for the right lobe reduced the tumor size and the chemo used for the left didn't. So we instead hit the left twice in a row when the working chemo was again available. I hope it worked, but the experience was not pleasant. I had meant to do more updates here on the blog last time, but didn't. This is my attempt at trying to do better this time.

The hospital experience was much the same. I don't care for the bed -- I find it very uncomfortable; I find it hard to sleep for more than an hour. I hate being tethered by IV to the meds tree of saline, some o' this or that, and the pain meds (well, those I have a little bit more of an okay time with). I had nausea again as my experience with hospital food continues to go downhill since the first time; then I hadn't found it to be too bad.

I am back home now, and prefer it by far. I've got different meds, of course (can't have a morphine drip at home, ya know). But after #3 I think I've got a cocktail figured out that seems to work for me. And the bed is much more comfortable. And the blankets don't feel like I'm sleeping on a pile of used towels. And I can get a Gatorade, cold milk, or my Diet Dew much more easily. And stuff like my Little Debbie's snacks seem to have more staying power than the hospital toast.

Heck, I can even sneak outside for a smoke. Yeah, I oughtta take that 2-day break as an opportunity to quit for good, but it somehow does take an edge off the pain for 5-10 minutes as I'm waiting for the meds to kick in. At those moments those few minutes mean a lot to me.

But of course the best is being close enough to at least hear the girls and pretend things are relatively normal. I even felt good enough an hour or so ago to give Heather her bath. And I can keep myself a little more back into routine putzing around on the computer: reading, chatting, seeing what folks on Facebook are doing. I can flip the TV on in the background (to more channels that might interest me) and keep myself distracted better. And when I'm tired and the pain is under control, it's easy to just roll over and shut my eyes and be able to relax fairly well if not fall asleep.

I hope things continue like this if not improve. As long as my situation doesn't begin to deteriorate before getting better like #3. So that's about what I know so far. I'll try to update here more often than I did last time.

C-E III

I'm tired of saying and writing "chemoembolization". I had my latest C-E on July 21st. It didn't seem to go as well for me this time. Maybe it accomplished what it needed to, but I've been feeling very crappy ever since.

[Continuing from this brief bit started from 8/12.]

It seemed to start off well, I remember joking with Dr. Close while getting prepped. The procedure seemed to go like the two previous ones.

Back in the hospital room after it was over, though, I noticed that my butt felt wet. I uncovered myself to find that the tegaderm over the incision had come off and that I had been bleeding a little. Perhaps that was a sign that things would be different this time. I called the nurse and they got me fixed up pretty quickly. But over the next few weeks I still had a black-and-blue mark in the area of the incision. Perhaps I was writhing around too much this time and hadn't been aware of it.

Again, I thought things would be like the times before, and so I tried eating like I had previously. But then I wasn't as up for the more solid foods as before, so I switched to more of jello and pudding meals. Even that didn't sit well, and this time around I had a couple of battles with nausea that did bring me to vomit twice. (Sorry for being graphic.)

I stayed longer into the second day than I had previously, but left the following day as I had before. My reasoning then and now is that it's better to be feeling like crap in the more comfortable surroundings at home than in the hospital. When you cut to the chase, besides the drugs administered there, there was little to be gained by staying.

I think I had planned to work on the Thursday and Friday as I believe I had done before. But this time around I even found it difficult in my attempts to work from home on those days. And I believe this same issue with pain spilled over into the next week. On Thursday the 30th, I mentioned this to Dr. Tom and he bumped me up to percocet. I remember calling the following Tuesday and mentioning that to me it had no effect; I believe I called it "junk". So apparently the pain had been much more than I had anticipated, and looking back it was more than I thought even at the time. On that Tuesday that I called, they prescribed my oxycontin to take "under" the percocet/vicodin (one or the other) and the ibuprofin. That may have taken it down a notch to tolerable, but I don't know how much I had noticed back then -- I believe it did lower my pain.

My sister Karen and nephew James had planned back in July and earlier to come visit in early August. How I will be feeling is never really something I can forecast, so it was all wait and see. Unfortunately, during the time they were here I had never really gotten back to even a nice 50% level.

I had picked them up at the airport on Saturday the 1st. On Sunday they went to Bismarck to help Mom with the plethora of issues involving Dad and his turn for the worse with his Alzheimer's. Dad had turned mean during a hospital stay, and has since been in the hospital, restrained at times early on, or in nursing care. So it has really not been a "vacation" type summer for us Sinkulas, time away from work or not.

I felt bad that I couldn't do much when Karen and James were here. It would have been nice to go to the Minnesota Zoo or some other things in town while they were here, but I couldn't really get too far away from my bed upstairs for any length of time. We did get to talk about things on a deeper level than we have before, and it was very nice to just see them again. But I really wish I'd had more life in me at the time.

On Saturday, August 8th, I believe, we did get together at my house with my cousin James and his family. It's odd that they live in the metro area but I hadn't visited in many, many years. This too was a good, albeit brief, time to visit with family for me. And again I'd wished I'd had more spunk.



Karen and James returned home on the 11th, and all that morning I tried to see if I felt like I could drive them to the airport and make it back myself. By the time it came to go, I didn't think that I could do it. Although the pain had receded by this point in time, tiredness and a queasy stomach were making a play. Perhaps they had been there before but I hadn't noticed them over the pain.

At some point during that week, I was doing partial days of working from home, and I think I made it in to the office for half of the day on that Friday (the 14th?). The following week I was still not putting in a full day in the office. It was about this time -- 10 days out -- that I was questioning my readiness for the next scheduled C-E, which was set for the 25th. After making calls to Dr. Amatruda and Dr. Close and "their people", we did decide to bump it. Likely due to the pain I was reporting, Dr. Amatruda wanted me to have a bone scan to verify that things had not spread there yet. This was scheduled for the 25th.

Hey, a new scan for me. It didn't have the no-eat, no-drink rules, so I was happy about that. I had to go in a little before 8 to get an injection of something lightly radioactive and then return for the scan at 10:30. Originally I was planning to go to the office and set up my computer which takes forever to boot up. But being a little tired and Suburban Imaging being about halfway, but closer to home, I decided to return home and just lie down and relax.

I relaxed too much, apparently, as I looked over at the clock which read 10:40 as I abruptly woke up. I quickly called to let them know I'd be on my way, and thankfully there were no appointments that followed mine. So I was able to get in and get the scan done. This one used a machine more like at CT than an MR: a thinner "donut". And I didn't need to hold by breath like I'd had to for the abdominal scans. But this one lasted a half hour. The only odd part was when my head was in the machine and one part of the "donut" was inches from my face. Other than that, it's an easy scan.

Folks other than myself tend to be anxious for the results. I decided to wait two days before calling about other things and to see if the results were in at that point. They were, and they indicated nothing new and bad. And apparently they had just called home and talked to Angie and given her this news.

So now were mostly to the present. I've been doing my best to work in the office all the last week, and the pain really given way to being excessively tired and a not quite settled stomach. Sorry I haven't updated in a while. I've been online a lot, but clicking buttons and looking at goofy pictures, or even skimming or reading, has been much easier to do than to try and sit and write this out. I know I must have forgotten plenty of things I was going to write when I'd had intentions of starting this weeks ago. But hopefully I hit the main points.

Al's Bonfire

I've been behind lately, and a little short on words. Hopefully pictures will be worth at least a couple.

4th of July Weekend

On Wednesday, Angie spent the better part of her birthday driving us to Bismarck. I'm not as flaky as I used to be in the vehicle, but she still insisted on doing all of the driving. We got off to a later start than we'd wanted, but of course she made good time. The cottonwood tree behind my folks' house was shedding cotton; Heather spent a little bit of time playing in this little bit of "Christmas in July". Angie dropped Brooke off for her summer visit to her dad's.

On Thursday we had a little bit of unfinished business to take care of. When we were back for Easter, we had gone "cemetery shopping". After some driving, we decided we preferred Fairview, but all we had done was a drive-through, more or less.

This time we needed finish what we'd started, which was actually buying a plot. I suppose it sounds a little strange, but it is a bit of a load off to have such things taken care of. I haven't been to many funerals, but I liked the view here and the grounds; I thought it was a nice peaceful place with a nice view.

I've been telling Angie that if I go soon that she can expect a long life and might fall in love again and prefer to be buried somewhere other than beside me. But she insisted and we went with the his/hers plots. After that, we ventured to a place east of town a little bit to shop for a headstone. Again she convinced me to go with a shared stone. So that stuff is more than half covered (I still have to have a foundation poured at the cemetery. And someday the final dates need to be handled.)

With that stuff out of the way, Angie got her Kroll's fix, and we got our knoephla soup. And a little bit of "oops, I forgot" remedy from Target. And by then I was pooped. We stopped home and I stayed back while Angie and Heather did more visiting in Mandan. After some rest, Dan and Sandy called and picked me up for a few beers at O'Brien's (I'm still drinking placebos.)

Friday got off to a bad start: Dad was having one of his "Mr. Hyde" episodes with his Alzheimer's, and he was pretty pissed about the person who had come by to help him with his lunchtime routine. He was pretty mad at me for a while too. Mom came home from work to help restore order.

That evening, we went to Flasher, ND to visit with Nicki Noonan's family. I even drove the 40 or 50 miles or whatever. It was the first time I'd driven much of a distance outside of the metro in quite a while. There, Heather played with Nicki's kids while the adults caught up a bit. I had to find a recliner inside a couple of times because I'd gotten pretty tired by nightfall. But we had a good visit and lit off some fireworks for a little while.

Saturday was the big day. We managed to get up at a reasonable hour to head to Mandan. Dan and Sandy had invited us to join them at her folks' place on 8th & Main in Mandan. It was a very nice location to see the parade. It was also nice to visit some more. Nikki and Mariah joined us later on, as did Jodi and Darin.

The parade lasted until a bit after noon. We ducked out of Sandy's family's get-together about then because Nikki and Angie wanted to take Mariah and Heather to see Ice Age: Dawn of the Dinosaurs. Angie doubted my traffic-navigating abilities, but I was able to get us home in time to drop me off.

Even though I was mostly just sitting at the parade, I was pretty tired by 1:00. The girls continued on to the movie, and I took a nap. I was asleep shortly after I flipped to a show on the History Channel. I slept for about an hour, but I was still groggy and slow for another couple. I believe I did manage to get Mom set up with a working cordless phone and a new digital converter box for a TV in her computer room. The girls all seemed to have enjoyed the movie.

After some supper, the three of us went to Darcy and Harley's to watch some fireworks. The view of Bismarck-Mandan from their place is quite spectacular. And this year a lot of their neighbors, as well as a lot of the town, had a lot of fireworks that they were shooting off. We could see the displays from the Capitol Grounds and at the Mandan Rodeo Grounds, but from quite a distance.

And again -- whoosh! The several days back were over quickly again. We did a lot of visiting and got things done that we needed to do.

Good News for a Change

Last week on Monday I had a CT and an MRI of the "after" chemoembolization I and II. As I've mentioned, I tend to avoid even looking at the disks they give me before I leave Suburban Imaging. So this morning I was again pretty nervous for my consultation with Dr. Amatruda.

Fortunately, this time he had relatively good news for me. The tumor(s) on the right (probably the dark spots to the left in the picture) -- treated in the first chemoembolization -- were smaller, and the one(s) on the left -- treated in the second round -- were the same size. There was a side note that there was a nationwide shortage of the particular type of chemo used in I that wasn't used in II. So our course of action is to continue another right-left go with chemoembolizations, and preferably with the one with which my tumor(s) got smaller.

With that, we're heading to Bismarck tomorrow for the holiday weekend. I'd better get to packing soon.

Chemoembolization Followup II

Much like the last time, it took me about 10 days to start getting back to normal. Of course I'd started trying earlier than that.

I'd spent all of Monday (June 8) in the hospital, coming home Tuesday about noonish. My issues with the bed disappeared with the morphine drip that I hit more regularly this time. As explained to me by Dr. Tom, the backaches and sore shoulders were projected pain from the liver. So I took the pain meds more liberally this time around.

Angie had asked if I'd wanted her laptop the previous time, but I declined. This past time, however, I decided to give it a go. It was rather nice to have internet access, even though I didn't really feel like being "on" that much of the time. Still, it was a more interesting way to kill time when the available TV channels did not interest me.

I took it easier that Tuesday being home, and didn't even try to go in to work on Wednesday. I was feeling a little more achy or tired, I thought, this time around. Or maybe I was just attending the pain with meds again more freely. Either way, I think it was probably better that I'd tried to take it easy. I did about a half day of work on Thursday, and darn near the whole day on Friday, leaving a little bit early.

On the weekend I tried not to do all that much, but did break down and decide to borrow a bigger hammer to pound the stakes for my raspberries' new "tennis court" that I'd started the weekend before when I planted the tomatoes.

This week Monday was almost normal, work-wise. But I had a hard time sleeping that night and Tuesday I worked from home. Today was pretty much the first day back at "business as usual" for me. My appetite has been returning this week after its absence in the previous one.

Happy 5th Birthday, Heather!

It's a cold and rainy day today, putting a little damper on Heather's 5th birthday. We had been planning to go to the Minnesota Zoo today; Heather was even counting down the days. But alas, 55°F, the steady rain, and Brooke's freshly-broken ankle changed our minds.



The four of us went to the movie Up, which we all enjoyed. Later we went to Chuck E Cheese. Heather has been saying all day that she's having a really fun birthday. Now it's time for a little ice cream cake.

Thank You

For about a week now I've been trying to come up with words to express my thanks to everybody for the benefit last week Friday. To me, "Thank you" just doesn't seem to say it well enough.

Words may have escaped me, but I want to let everyone know how blessed I am to have you wonderful people in my life. Thank you for taking the time to keep me in your thoughts and prayers; I will do well to keep you in mine. Thank you for your overwhelming generosity, it is very humbling. And special thanks to those who made long journeys to share the night.

I wish I could say it better, but thank you all from the bottom of my heart.

Chemoembolization Followup

I had my chemoembolization on Tuesday, May 5 according to the calendar on this blog. The procedure itself was somewhat interesting for the little bit of it I remember. It was done in a room that seemed to be a cross between an operating room and a really slim and sporty MRI or CT machine. I don't remember all that much of it actually.

Staying the night in the hospital was kinda boring and I found the bed uncomfortable. It was an air mattress that made noise whenever I shifted weight, as some pump moved air to another part of the mattress. But I think it was permanently set to 'concrete' as a comfort level. I didn't choose to hit the pain meds all through that day, but when night came I hit it a couple times to help me sleep through the night. Most of my issue, to me at least, was the bed.

I left the hospital Wednesday and took it easy. This is pretty much indistinguishable from my routine except that I did not go to work. Thursday I tried to work from home, but only managed to do so for what I would bill as a half day. And again, I took it easy (whether or not anyone can tell the difference is another story).

Friday I went into work, but again managed about a half day. The thing that I started to recognize as my issue was perhaps a very bad case of acid indigestion. It was causing an upset stomach, but what I really felt was pain in my back and shoulder. Saturday night Ryan was returning, and Noel and Cathy also dropped in to visit. The whole time I could not sit still -- I was perpetually uncomfortable and kept changing seats or going to get something mostly for the sake of moving around.

On Sunday (I believe) I was talking to Dan on the phone and mentioned this, and he told me about the stuff he takes for a similar issue. I just happened to look over at my meds and found that I had "the cure" lying around. I'm not one to medicate myself if I don't feel "more than a little icky" -- so I stop taking some of the things I'm prescribed and tend to forget a little.

After taking the Prilosecs, or whatever, I had the return of the appetite. This may seem like nothing, but I really haven't had an appetite since the time before 1990. Suddenly, though, it came on full force and I was eating three times a day. In most recent years I wasn't able to do that for more than a day or two if I was really trying. For the moment, I'll try to take this as a good sign.

In fact, all-in-all I've been feeling rather perky the week or so. I've even needed a shave and some hair is coming back in on my head. The hair feels like a baby's hair, and I'm not sure if it's coming in dark or if it's gray. It's pretty good timing, though -- the hat I've been wearing was beginning to get a little warm now that we're crossing into summer.

And with the change to warmer weather, we've been doing some yardwork: getting the lawn mowed and raked (though I did poke myself removing the dethatcher blade and now apparently need to get a tetanus shot); Angie and the girls planted flowers. We're keeping busy with that sort of stuff.

Benefit

At Cathy's surprise 40th birthday party in March, several friends initially put together the idea of doing a benefit for me. I resisted at first -- I'm not the type who likes to ask for help, but I have since relented.

Noel asked me to provide some information for a flyer. I borrowed some material from this blog and gave Noel a copy to touch up. Here's what we'd come up with:
Benefit

Publish at Scribd or explore others: Brochures & Catalogs

I've stayed pretty hands-off on this. Angie and Noel and others have been doing the work. But since paper versions have been floating around the real world for a while now, I thought I'd also post it here.

Treatment Options

I've been asked more than a few times about considering treatment options somewhere else. I've looked into things a bit, and I believe both Dr. Amatruda and I are both open to suggestions. My sister Karen has looked into possibilities in the Seattle area for me. I passed this along to Dr. Amatruda who replied,

I dont know of any unique therapies available in Seattle. John Thompson is a melanoma oncologist out there who is excellent.

You may wish to see if he has anything of value for you. Let me know if I can help sort out any information, etc.

In the past week or so since I found out that the chemotherapy wasn't working, I haven't looked into the other options in detail. I've had some scans and prep for tomorrow's chemoembolization. Essentially, I believe, the attempt at a systemic treatment to halt progression and get rid of the tumors (the chemotherapy) failed. Right now the primary concern is to stop these tumors from progressing. The chemoembolization is another attempt in that regard.

Previously there was a research study or two that we've made attempts to pursue. One didn't pan out, and the other it was probably fortunate that I didn't make it into (I'm not 100% sure that this was the particular one).

I hadn't gone searching for the two studies above; Dr. Amatruda was looking into options and presented them to me. I've bounced by him some of the articles that turned up in my feed, but we've pursued other options.

And I still have IL-2 related possibilities -- such as clinical trials -- out there as an option. What we decide to pursue tends to be with regard to the most recent scans and my tumors' responses to the treatment. We are pretty much continually looking into new developments, even though many don't seem to fit my situation for one reason or another (like the Mayo study due to my A3A11-ness).

Bottom line: yes, we're open to any options. Evaluating, comparing, contrasting, and considering pros and cons tend to make for interesting little consultation sessions. So please, keep any ideas coming. I want to find something that works as much as anybody!

Near Death Experiences

My friend Ryan was visiting this weekend while passing through from the Philly area to North Dakota. It was a good visit; we pretty much just talked and stayed around the house all weekend.

One of the things that I'd forgotten was his motorcycle accident in the early 90's: talking to him on the phone doesn't show that his walk is still not what it was before the accident. But he also mentioned his near-death experience from that day a long time ago.

That brought to mind a blog post I'd made back in November 2007 on one of my prototype blogs elseweb. Much of that post was a show I had found online and posted. Here is a slightly trimmed version:

Near-Death Experiences

Also along the way I encountered the experience of Howard Storm. I found the following interesting regardless.

Build your own custom video playlist at embedr.com

[...]

As a footnote at least, I need to mention that I do not always fully take in the mountainous information that one can encounter as a result of searching the web. But I did feel the need to make special mention of a book that I had read decades ago with no original correlation to the development of my current debate. But encountering it 20ish years later within my searching is a coincidence I have no issue with sharing. Embraced by the Light is a good book to read for any reason.

I also found it interesting with that book. I had read it rather out of the blue (as far as I can remember) about 20 years ago. I had interest in it again back in 2007. And I certainly had a renewed interest in it of late. I had ordered it a couple months back and reread it over a weekend.

It's quite interesting to look back at the things I'd read and try to ascertain whether it was my initial read that influence some of my later views, or that my later views ended up matching a number of things that happened to be in the book.

More Bad News

Time came once again this week for my CT scan and a visit with Dr. Amatruda. The days since Monday's scan went a bit like last time -- I didn't really want to get advance notice of the results, but it makes for a stressful couple of days.

And there was not much relief for me in hearing the result, which was the the tumors on the liver continue to progress. Which means that the chemotherapy isn't working.

We discussed the temozolomide, but Dr. Tom presented a new therapy: chemoembolization, which is a kind of interventional radiology (I'm told).

It doesn't sound like a great deal of fun, requiring a hospital stay of 2-3 days. And this treatment would alternate sides of the liver being treated at one month intervals. So I believe it might go like left-right-left-right over a 4-months span, with the hospital stay each time.

Bummer.


Both Angie and I could admit rather readily after we were home this evening that our gut feel, each of us, was that the other chemo was not working. So it wasn't the hugest surprise or shock. It is just very disappointing.


During the day, mostly before the consultation, I had much better little stories to try to put together for this entry: much more colorful things to say (in my opinion). I was going to start this entry the other day after the CT scan, but I didn't.

There was me goofin' on the nurses about my veins that had bled somewhat excessively the previous two scans. Or telling them stories of my days with 3M Brookings where they made some of the tapes being used on me.

I could almost squeak it out now, but I've felt a bit deflated since the consultation.


Since it seems I haven't completely hidden this blog away, and several folks on Facebook tell me that they read it, I'll probably just drop this there. And get Heather in the tub. And save a bit of writing for another night.

Heather's Perspective

I was feeling less than peppy the Sunday after chemo, and Heather wanted to take pictures. I turned her loose with the camera. A few days later she asked to do so again.



Click for slideshow.

Long Time, No Update

Last week on Monday I had the chest/abdomen CT. With most of them until now, I was interested in seeing the results. They have a CD ready to go by the time I leave Suburban Imaging, and I remember wrestling with the pile of pictures to see anything I might recognize as something. But this time around I really wasn't looking forward to obtaining any knowledge from the scan results.

Ya see, up 'til now it's been about finding out the extent of what I have. But to me, this time was different. This one was the "after" of the two rounds of chemo. Hope for the best and be positive and all that, but eventually certain moments come along. And this was one: the scan results would essentially show whether I'm doing better or getting worse. I didn't care to roll the dice, but instead chose to face up when I went to talk to Dr. Amatruda on Thursday.

This worked for me to stay the course and have a normal Monday. But Angie seemed to be more anxious for the results, and on Tuesday I inadvertently used my gift of words not coming out of my mouth right -- so it took a bit of a discussion to get her to understand what I meant. And in the meantime I played a message from Dr. Amatruda's nurse Michelle that was received on Monday.

So by Wednesday and early Thursday the myriad mind games were playing with my head. For example, Was it a good thing that the nurse, rather than the doctor, was calling? Or were they calling because I needed to know something before my next appointment? It's not a very fun game.


Thursday dragged while I was waiting for my visit with Dr. Tom (which is now how I mentally say it instead of Dr. Amatruda); I let him know I was coming in cold. He has a demeanor that makes it really easy to talk about this stuff. He started by mentioning that it may have been a good thing that I kept myself in the dark -- Michelle was calling to let me know that the cancer was progressing, but that in the intervening time he reconsidered the earlier conclusion and he was not convinced of progression.

I've got some notes, so I'll try to sketch a few of the things we discussed. I believe I have 5 tumors (previously the little seeds). Most are about the same size, one faint area was bigger (9mm). We discussed ongoing treatment options, which included some usual suspects:

• Continuing the carboplatin + taxol for another round of 2 to be followed by another scan to see how that goes.
• Moving on to the IL-2. Dr. Tom explained how this, though it sounds wonderful and all by making chemo seem like a walk in the park, can actually be a gateway to clinical trials. And I'm led to believe that clinical trials -- generally speaking -- currently produce the best outcomes. [Geez. Now I'm talking the lingo.]
• Pills called temozolomide.

In general you're looking at our order of preference. Friday I was already scheduled for another push of the chemo, so we continued forth.


My chemo was scheduled for 8:30. Not being the morning person, this didn't go smoothly -- I woke up at 8:15. In the short span of about a minute, the following ran through my head: Angie didn't get a good sleep last night, Heather is still sleeping too and it'll take too long to get Heather ready, I've felt fine (driving-wise) after previous chemo sessions, I can always give her a call later, and more if you call now. I soloed. Needless to say, Ang was pissed with me.

I tried to take it easy, but maybe fixing the washing machine on Saturday wore me out more than I expected. Whatever the reason, I felt absolutely horrible yesterday. I flipped channels, napped, and felt like crap -- lather, rinse, repeat for 12 hours. We did catch up on some TiVo at least.

I went to work today, but still felt worn out and had the body aches. But at least they weren't as bad today as they were yesterday. I called Michelle and asked if this was normal. She let me know that this taxol coctail is apparently some pretty wicked juice; that as long as I wasn't running a fever what I was feeling was essentially par for the course.

Hoag Study Results

We got a call today from Christina with the Hoag Center, and unfortunately they were not able to develop a vaccine from the tumor sample we'd gotten from my liver. Fibroblasts(?) apparently made doing so initially difficult and eventually made it impossible.

There could be a possibility of trying to donate another tumor sample, but to do so I believe I understand that I would need to be off chemo for some time. And again, if I understand correctly, this is because the chemo is trying to kill the tumor, and the Hoag study is trying to grow it. So it might remain as a possibility, but for now we'll just ride through the chemo and I'll be hoping that it works as intended and systemically rids me of the cancer that I currently have. If I understand melanoma, though, even that may only be for a certain period of time. So I still have the same options as before (except I already have a hat).

I need to update my calendar with my appointments: I've got a CT, a visit with Dr. Amatruda, and more chemo scheduled for the second week of March. I expect to be discussing the Hoag study results (or lack thereof) with Dr. Amatruda in addition to the results of that scheduled CT. The CT will be an 'after' to compare with the 'before', which will tell us the effect (or lack thereof) that the chemo is having for me.

In the meantime, I have the 'fun' of trying to get my affairs in order. There's a lot of little things to try to write down and plan. I don't try to let it bring me down, though. I have generally remained in good spirits and plan to keep it that way.

Appointments, Discussions, and Hair

Angie accompanied me to my visit to Dr. Amatruda last week. She had a particular question in mind. The question didn't have a particularly great answer for her to hear, but she needed to ask it and have it answered. Essentially the question was, "How long?" Dr. Amatruda began explaining, and then gave me a bit of a look to ask if it was okay to be blunt. The short answer he gave was "nine months".

She was very shaken, and I've put off writing this for a while now. I suppose I've understood that answer, but it was really the first time I'd heard it in those terms myself. During the course of this thus far, I've learned how the numbers game works, and I choose to fight my natural-born pessimism and look at this in an optimistic light.

As it so happens, tonight I found the following in one of my search feeds:

Nine months? If the statistics for Stage IV malignant melanoma applied to every patient, I wouldn't be writing this post. I would be dead already as the statistics point out.

I followed the link and found the following chart, which better expresses the optimistic view I try to focus on:


The odds are what they are, but I don't see any zeros.

Having confronted the numbers in this dark way, Angie and I have had many difficult talks regarding a less-than-optimistic outcome for me. "Hope and pray for the best, but prepare for the worst", so to speak. It isn't the most enjoyable exercise, but it's not something that scares me at this point -- Angie is a different story. We'll keep at it; it would be good if I could put my procrastination off a bit though.

On Friday I had my second chemo. This one went much like the first, with me napping through most of it. The staff is friendly and fun, so it's not an unpleasant experience. Afterwards I wasn't as tired as the first time around, but maybe that's because I had some idea now of what to expect. Saturday I may have been a little bit too much "business as usual" because I was pretty worn out on Sunday.

Going back to a moment before Tuesday's appointment last week, my hair had begun falling out in clumps. It continued, and by the end of the week what was left was looking pretty ratty.

So I decided to go for a mohawk with the hair I had left. I think it turned out pretty nice -- Heather said she really likes it.