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.