Yes, I know… every update seems to be overdue lately.
Not a whole lot has happened since the last update. I’ve been settling in to my new treatment, which is going more or less well. The side effects are pretty minor and not always there. Things like swelling in my ankles/feet, skin irritation and occasional headaches.. I think I’m just pregnant.
Since things have been generally stable but hadn’t really improved, we decided that I should go back up to Mayo again to see if they had anything new to offer. I went up with my dad a couple weeks ago and they were happy with what we’re currently doing. We discussed radiation as a possible additional treatment to try to shrink things a bit to ease my swallowing. We had already talked about that down here, so it’s nice to see that we’re all on the same page. They also mentioned that they were excited about some developments in immunotherapy but unfortunately that’s not approved for my type of cancer yet (though it’s being researched as we speak, so hopefully it’ll be soon). About a week after being up there I’ve noticed a significant improvement in swallowing for the first time in about 6 months or so. It’s not all better, but I can certainly eat easier than I’ve been able to for months. I let my doctor know so we’re going to watch things for a bit and jump into radiation if we need to. Hopefully I an see improvement without since it’d mean having a feeding tube for a few months again…but we’ll just figure it out as it comes.
In more fun news, Quinn started summer preschool a few weeks ago. She appears to be a lot more excited in the morning than she had been with daycare. I’m anxious to see how she is in a few weeks, but I think she’s enjoying it quite a lot.
Holy cow, time has gotten away again….
Fortunately, there was no excitement while I took my chemo break. The holidays came and went without too much stress. I started back up with my chemo, have done a few treatments and here we are.
Unfortunately, my grandpa Rudy passed away in December. My tumor grew during my break (as expected). My appetite has been pretty lousy. …and this cold weather just needs to stop.
After I started back up on chemo, we had done a scan to see how things looked and it looked like we were nearly back where we started – in just 6 weeks or so! After a few treatments and continual weight loss and lack of appetite, my doctor wanted to do another scan just to make sure we were doing the right things. The scan looked nearly identical to the first one we did when I started back up. This meant the chemo was at least holding things steady, but things weren’t really improving. We decided to keep pushing ahead for a little bit, and keep a close eye on appetite/weight. As of last week, things really hadn’t improved much and the doc seemed like he wanted to go ahead and call this one done and move on. I stubbornly wanted to do a couple more, so he suggested 2 more, then a scan to see how things are. In the pic below, the left column is the recent scan, the right is back in September. The red highlight is the esophagus and the blue is approximately the tumor in the stomach. It’s very approximate – all of that tissue moves so much, it can look very different from scan to scan, so please look at it as such.
Let’s just say that wasn’t the right course of action… Last week was pretty awful as far as side effects are concerned. Every since I’ve started back up, treatments have been more and more difficult. Last week consisted of lots of time in bed between work and vomiting. Needless to say, I lost even more weight and just generally felt pretty crappy. I decided over the weekend that I didn’t want, nor could I afford another treatment of this chemo. I called Monday to get in to see the doc and make some changes.
Today I went in and talked with the doctor (and his nurse Amy, who I used to see all the time in the beginning but since I moved days, I haven’t talked with her in nearly a year!) and we discussed what to do. We’ve been loosely expecting to move to an antibody treatment since the middle of last year when a new stomach/esophageal junction antibody was approved for treatment. I hadn’t spent much time looking at it since my treatment had been working fine at the time. It’s called Ramucirumab (Cyramza), and it’s a whole different approach to cancer treatment than typical chemotherapy. It generally has little to no side effects and is a lot more targeted as well. Instead of just killing all cells, it lets the body’s normal immune system do all the work, it just tells them where to look for bad things.
We decided it was time to move on from irinotecan and start up with this on Monday. I’ve gotten about a year out of irinotecan, which is great. The doctor said usual effectiveness is 3-6 months, so that’s good. It’s been good at holding things steady, but not really so much at shrinking. It’ll go back on the shelf so if we do need something to help hold things later on, I can always take another look at it later.
For now, I need to focus on getting my weight back up, which will hopefully be easy if the antibody treatment works. Not being sick will certainly help my appetite. I’m currently able to maintain it, but gaining is tough. If I lose much more, I’ll need to get a feeding tube again, which I’d like to avoid if possible… but if that’s what I need to do, that’s what I need to do. Until then, I have things to do! I’m looking forward to the new treatment, I hope that my über immune system will help the antibodies kick some tumor butt and I can start feeling a bit better. I have lots to do before summer!
Yet again I’ve been pretty lousy at updating, but I have a good reason this time! I’ve been keeping myself pretty busy, still doing chemo every two weeks, but have a pretty good handle on how the side effects will play out each time. A few weeks back I decided to take a treatment off, so I had an extra two weeks of “recovery” between treatments. I wanted to gauge how good I’d feel and how much a treatment would hit me after taking a little time off. I’m planning to possibly take 2 or 3 off during the holidays so that I can feel “good” for Thanksgiving and Christmas. We’ll see how that goes when the time comes.
Since I was feeling better I also finally made an animated image of my original PET scan that does a really good job of showing how much and where the tumor is. The black area in the middle shouldn’t be there (the brain and kidneys are supposed to be black, so ignore them).
I couldn’t have timed it better, I was able to use my extra energy to do a bunch of work on my car, with the help of a few good friends, and take it out to the racetrack for the first time since 2008. I hurt for days after all the work and a day of racing, but it was so nice to be able to do all of that again. I knew from last time that I was lacking a bit in the brake area. I had upgraded the pads and thought that would help a bit, but I hadn’t planned on a 6 year gap between installing them and using them. It’s safe to say I need more than just pads…
I was really excited that the track photographer was able to get a great shot of me driving like a crazy person.
After all that fun of course reality had to come back in. Quinn has finally started “testing” here and there. She was being a little butthead at day care and so we had a big chat with her and laid out some rules and consequences. Of course, we thought that’d just “work”. HAH! The next day, she was bad again – so we followed through with our first punishment, taking away one of her favorite toys – some clip on doll thingers. She was pretty bummed, but remembered that we had talked about it earlier. I thought that was enough, but the next day – right back at it again. This time we took the LeapPad away, another agreed upon consequence. Apparently two was the magic number because suddenly she was behaving just fine all day long! We haven’t had any problems since, and her week without each thing has gone by with no issue, so here’s hoping we passed her test hehehe.
We’ve also been encouraging Quinn to write her name. She’s always making “lists” of things, but it’s always just scribbles and nothing resembling letters. I know she knows them, and knows how to make many of them, so we keep asking her to try her name or sign neat things she makes. Here’s an example of the second time she wrote her name all by herself!
A few months back I printed out an adapter that would let me use my DSLR camera with my telescope. I finally pulled it out last night and tried getting some shots of the moon. It was pretty darn bright and the air was a bit hazy, so the focus was kind of crap, but I’m happy with the initial results. I’m anxious to play around with it more as I have time.
That’s about the extent of the excitement around here lately. I’m sure the holidays will be super busy, but I’ll make an effort to drop a post or two here if I get the chance!
Yesterday I took the day off (to pad the long weekend) and to hang out with Quinn before her and mom went to see Granny Heeren for the weekend. I snatched her from daycare around lunchtime, which had her quite confused…
After some of her requested Taco John’s, we took off. She’s getting pretty good with directions and asked why were weren’t heading back home. I told her it was a surprise. Once we got there, she wasn’t quite sure where we were and when I told her, her response was “We’re at TRAAAIIINNLAND?!“
It’s been about 25 years or so for me, I don’t really recall the last time I was there. I probably haven’t even driven by it in 15 years, so I was mildly excited to see how things had changed. As I expected, for the most part it was unchanged. The only real updates of significance were new fireworks and an update to the drive-in theater. Quinn had quite a bit of fun hitting all the buttons and saying “chugga-chugga-chugga” every time a train passed by. The builder “Red” was walking around as usual to make sure things were running smoothly, even stopping to make sure Quinn was enjoying herself.
It’s held up pretty well to the 33 years it’s now been open. While obviously being a bit dated, it’s still a pretty impressive layout. On our way out, Quinn had to play on the small engine by the door. We also decided to pick up an engineer hat – because, you know, why not!
Before we left we checked out a new addition since I had been there last – an old depot. The building itself was 150 years old and was full of all sorts of railroad memorabilia . Quinn wasn’t quite as interested, but still seemed to enjoy looking at some of the larger items. They also had a caboose right next to it, so we had to take a quick look at that as well. Of course, all the excitement (and no nap) wore the little munchkin out and she was zonked out shortly after hitting the interstate.
Not a bad way to spend an afternoon with the offspring 😉
So, time has been flying by lately! I’ve been pretty busy and have been doing a lousy job of posting updates. Here’s a bit of a recap of the last couple months:
In May, I traveled to Indianapolis for work to do some training. My team, along with other development teams in other markets have been rolled into a new group so we can use our resources a bit better. This was one of our first gatherings to start figuring out how to make things happen. I expect I’ll possibly be traveling a bit more in the future as well. It was a good trip and it was fun to see how they do things in Indy.
Also in May we went to Adventureland with our friends Carrie and Andrew and their daughters Helen and Lily. Quinn and Lily are bestie buds, so the day was pretty fun. Quinn thought all the rides were pretty cool and didn’t get scared on any of them. She even went on some of the crazy spinny rides and had a blast. She also got to hold a baby kangaroo, sort of… she didn’t quite know what to do so it was more of a touch than hold. It was fun to get back out there. It’s been a long time since I’d been out and even saw some old friends!
June brought in racing season. I was able to go to the first autocross at Marshalltown and had a great time. It ended up raining, but that was ok because my car was the fastest of all in the rain! I was happy that my energy stayed up all day and I wasn’t too worn out. I ended up meeting up with some friends in Ames and we had a nice dinner at Dublin Bay. It was the longest day I’ve had in a long time – and it felt pretty nice to not be out of gas at 5pm.
Later in June I had the opportunity to drive some super nice cars on the racetrack near Omaha. After a trip to Schlotzsky’s (of course!) we headed down to the track. I chose to drive a Ferrari 458 and a Nissan GT-R. I got to take them out for 3 laps on the short version of MAM. Of course I wish I had more time with them, but it was a blast. Both of those are cars that I’m unlikely to ever drive, let alone on a racetrack. In car video is below…
I’ve been keeping busy otherwise with household projects and my hobbies. My fingers are getting better but are still numb. I also taught Becky how to mow, so she’s been doing that this year. She also got a different mower that needed a little TLC, so that’s kept my project list full too.
I’m still doing treatments every 2 weeks, but now only seeing the doctor every other treatment. I’ve graduated to pro status. I had my latest scan last week and it’s continuing to show improvement. It’s very clear, especially if you compare the first scan to now. I will share images once I get a new copy of the latest scan. June 26th marked one year of chemo, all my nurses couldn’t believe it’s been so long already. It certainly doesn’t feel like it has been a year. The first couple months were tough, but the last 6 especially have flown by. My doctor keeps telling me I’m doing very very well and keeps reminding me how tough this is. Fortunately for me, I don’t have to try – my body is good at it. We also discussed some new treatment options that have been approved recently, so we’ve already been able to expand the list of options if the current treatment stops working sometime in the future.
For now, I’m going to keep doing things that eat up my time for blogs posts!
Updates haven’t been as frequently lately since I haven’t had too much to report. I’m still getting treatments every 2 weeks and will continue to do so until something changes. My doctor is happy with how things are progressing so far, but we still aren’t looking toward any “goal” other than to keep heading in this direction. I’ll have progress scans every 2-3 months to see how things look and we’ll adjust treatment if needed.
I’ve been trying to settle into a new routine of sorts, now that the constant thought of is it working? has mostly passed. As I posted earlier, I’ve taken up a new hobby in 3D printing that has been a lot of fun. I’ve been able to stretch my brain and get off my butt. Quinn loves to see the printers run and is always excited when I make her something. My neuropathy has been improving very very slowly. I’m able to do a bit more around the house, but I’m still pretty numb. The new routine is pretty much to get chemo, taste a yucky taste in my mouth for 2-3 days, about 50% of the time be up half the night of the chemo day because of the steroids, but still be somewhat worn out the whole time. About a 6-7 days after chemo, I tend to stay home since I’ll be in the bathroom a few times a day for a couple days. It’s technically diarrhea, but it’s pretty mild – especially compared to what I had with my first treatment. All in all, this stuff is “easy” compared to previous regimens. I’m able to go to the office more and generally enjoy more of my time. I expect posts to become a little more fun oriented as the weather is improving…
The cancer video that I appear in, made by the same guy who did the “Iowa Nice” video, has finally been finished. It’s got some not-so-nice language, so handle little ones accordingly.
Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it. – Michael J. Fox
I had another scan today to see how the irinotecan is working. It appears to have slightly shrunk everything! I’ve not seen the scan myself yet, but will take a look tonight.
The great thing, aside from things shrinking, is that I can finally settle into a routine a bit. Changing chemo regimens is tough because you have to go for about 2 months before you can know if it’s working or not. Hopefully this will keep working for a while!
I just realized it’s been a month since the last post. There’s not a whole lot new going on. I’ve had more treatment, and that’s still going smoothly. My doctor is happy with how things are going so far and thinks we’ll be happy with the scan next week. I hope it’s at least stable so I can settle in for some treatment. It’s always nerve wracking to switch up the approach since there’s about a 2 month window before we measure our progress…
Quinn is still being a crazy 3 year old. She’s coming up with more silly stuff to say just about every day. She’s been getting pretty good and recognizing numbers and quite a few letters and can even count (most of the time) to around 10. She hasn’t quite learned how to pick up her toys yet, even though she always does at day care.
We got Becky a new car a couple weeks ago. We’re now an all Subaru family! We bought a 2004 Forester XT from some friends of ours. It’s got quite a few miles and some nasty rear quarter rust, but it was a great deal and our friends were looking to downsize while one of them goes to Afghanistan soon. Part of our payment was her CR-V which they are actually selling to my mom/Amber, so it’ll “stay in the family”. The new car has a turbo, so Becky has been getting used to the extra power….and fuel consumption. It’s quite nice though, it’s very similar to my car on the inside and much more creature comfy than the more utilitarian Honda was. It should make longer trips easier to tolerate!
Now that I’m slowly getting feeling back in my hands, I’ve been spending a lot of time with my 3D printer. There is certainly a learning curve to getting successful prints. I’ve about got the basic stuff mastered though and have even started printing parts for a couple friends to build their own printers with. Now that I’ve learned quite a bit, I’m considering building my own from scratch that would allow me to print bigger things and at higher speed. I’m still sorting out the budget requirements, but it should be fun to tinker with.
That’s about all that’s been going on in our world. I’ll be updating next week after my scan as well, so look for that Friday or Saturday.
It’s been an action packed week or so around here! I had my second cycle of the latest chemo on Feb. 13th and it’s been going as well as the last one so far. I forgot to post anything about it because it’s generally uneventful, which exactly what we want… I’ve been mostly feeling pretty well, aside from a touch of nausea for the first few days and a tiny bit of diarrhea about a week in, just like last time. My neuropathy is still there, but does appear to be improving slightly. It still changes every day, but it certainly is feeling better than it has. I expect another 4-6 weeks before it’s back to normal, but nerve tissue is weird, so it’s anybody’s guess at this point. In fact, just today things have been noticeably better – but tomorrow it may feel completely different, even worse.
I had been letting my hair grow in since it appeared to not be affected by the new stuff immediately, but it started coming out again last week. Even now, after shaving everything I’m still dropping lots of little nubs everywhere – I have a feeling this may take me all the way bald, but we’ll see.
A week ago Saturday we decided to add a couple of new family members!
We drove through the epic snowstorm to Oskaloosa to see the kitties and drove all over the countryside (yay GPS) trying to find the shelter. A quick call to them got us sorted and we finally made it. All the kittens were inside the main office and these two and one other were quarantined from the rest since the others had ringworm. Both were pretty cuddly, but Leeloo was quite relaxed. Earl was a bit skittish, but pretty comfy for such a young kitten. We were told they were the same age and brother/sister. I didn’t quite buy it, but liked them both anyway. I had been thinking about getting a couple cats for a couple months now, but was unsure about my allergies. Since Munky, I’ve had no wheezies and have generally felt a bit better. Granted, I’ve lost a lot of weight, but I was still not sure. I made the mistake of telling Becky that I was considering it… so she started looking, obsessively.
She found Leeloo (who’s name was Laura at the time) on Petfinder. I stumbled on her “brother” later on. I thought he was a damn good looking kitty. I’ve liked gray cats for a long time and had already kind of decided I wanted a gray one if we decided to get another, and being a Star Trek: TNG fan, “Earl Grey” was a great name. I checked with my doctor to make sure I could start taking my allergy pills again and we were set. Aunt Katie come over to hang out with Quinn while we went, she had no idea what we were up to…
They’ve been pretty comfy in their new home so far. It took Earl a few days to come out regularly, Leeloo was just right at home though. Earl is still a touch nervous at times, but both really like playing with each other and the whole house. We took them to our vet to get a quick checkup, which is free for shelter cats. We found out that they are not likely related and that Leeloo is about 5-6 months old and Earl is about 3-4, which we had been told they were around 3.5 months – so not too far off for him. They got some shots and were otherwise in good shape.
Quinn loves the new kitties! It’s been fun to watch her lay and pet them or pay with them. it’ll get more fun as they get more adjusted. Becky and I have been getting our doses of kitty cuddles too. It’s been about a year since Munky was put down, so it’s been a long time since we’ve heard purrs and smelled cat poo!
I’ve been slowly getting back to living life a bit and started exploring a new hobby thanks to a fellow geek friend. He’s been playing with 3D printing quite a bit and now has 3 printers. He used his first one to print parts for the other two and posted on Facebook that he was looking for a new home for the original machine. I mentioned that I’d love to buy it but I didn’t have the budget for obvious reasons. He messaged me and said he’d rather see someone use it, so if I’d use it/play around with it, he’d let me have it on extended loan. I was floored! I got a quick primer on the basics and picked it up last week. It’s a Makerbot Thing-O-Matic from about 3 years ago. The main reason he moved to other printers was the build size, which is 120mm or about 4.5 inches. It’s a pretty steep learning curve, but it’s been fun to explore some new things. I’m learning the workflow for now, then I plan to design some of my own things by using the skills I have from the old post production/graphics days. I’ve been able to print some things for Quinn as well. She thinks it’s a pretty cool thing too and wants to watch it print.
I expect it will get even more fun as I print more complicated things. After spending a few days with it, I asked my friend what he’d want for it if I did decide to buy it… I was completely surprised by his answer. Let’s just say, it’s a lot more affordable than I expected so unless the “newness” wears off, I think I’ll be its new owner.
I decided to try out a Yoda bust, seen printing above. The result was great. One of the axis motors jumped, so there is a misalignment about halfway up the model. I learned how to fix that, so it’s no longer an issue.
I’ve also added a camera to the printer so I can watch it from another room. If you want to see what I’m printing, click here for the full page (I’ve embedded the feed below as well).
During the latest storm, I decided to take out the trash and my back steps decided I’d look better on my back side. Both feet flew out and I landed on my back and tail bone. Somehow I cut the crap out of my fingers, presumably on the railing. It felt pretty great… fortunately I’m only a little sore around the back now and my fingers are healing well. When it happened, my fingers bled quite a lot due to my blood being so beat up. I was also concerned about bruising, but somehow I didn’t get any. Click below if you want to see the fingers…
So that’s a look at the past couple weeks. Now that I’m kind of settling into a routine with this chemo, I probably won’t post as much about that kind of stuff aside from when I have scans or when there is news to share. I want to get back to more fun things on the blog!