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!
I started my new chemo on Thursday and so far things have been good. The infusion took about 90 minutes after the premeds were done, so just slightly longer than my previous chemo. This time I had a push of atropine right at the beginning of the infusion to help prevent some cramping that can happen. Once I was done I had a tiny bit of nausea and some twitchy muscles, especially eyelids and thighs. I was able to eat fine the rest of the day and haven’t had any other problems so far. With this chemo, there is a pretty high chance of some diarrhea, so I have that to watch for (yay), but it shouldn’t be as bad as what I dealt with during my first treatment regimen.
On Friday I felt pretty much back to normal, aside from being just touch tired. The nausea was pretty much gone and even the bad taste in my mouth I usually get had mostly gone away. I’m still dealing with numbness in my fingers and toes, but it seems to be improving slightly. Everything still feels very stiff, but I am getting a bit of the more precise sense back in my right fingertips. Both hands are kind of in an annoying tingly stage right now where I can feel a bit more, but they are almost itchy. I know it will take time for this to heal up, so I’m not expecting to wake up one morning and be back to normal, but it certainly is nice to feel it heading back in the right direction.
I’ll be heading back in 2 weeks for another treatment and I’ll be doing 3 or 4 of these and then we’ll check progress again, hopefully the remaining treatments go as smoothly!
Updates have been a bit scarce lately due to my numb hands/fingers, I hope everyone can understand…
I had a progress CT scan last Thursday to see how the new chemo was working. The radiologist said that it looked like it had improved slightly, which is the first time that imaging has shown improvement, all the other scans have been “stable” or, in the case of Mayo, slightly progressed. That was wonderful news of course. We are going to go ahead and switch to a different chemo, irinotecan, just due to the neuropathy side effect of the docetaxel. We’re afraid to push it much further and end up at a point where I’d be unable to type. The doctor said that if I wasn’t a programmer or if the tumor was really melting away, we’d keep going. But since it’s only a slight improvement with pretty hefty side effect, we’re going to try something new. Hopefully I’ll have feeling back in a couple months or so. We’re also noting that the docetaxel was effective and that we stopped due to toxicity, not efficacy, so we can come back to it later if needed.
My new schedule will be every 2 weeks instead of every 3. The dosage time will be similar, so that will be good. The main side effect I should see with irinotecan is diarrhea and possibly upset stomach, so we’ll see how that goes. Of course there is a huge list of other possibilities, but that is the most common. I got a “free” week since we are switching and will be starting the new stuff on Thursday. I’m anxious to see how I react to another new drug, now that I’ve had a couple different types of treatment. Hopefully this one is as easy on me as the last, aside from the numbness…
I apologize for the lateness of this post, it’s been over a week since I got my last treatment but I’ve been pretty busy. It’s also more difficult to type lately because the neuropathy has really set in. I’ve been taking duloxetine (Cymbalta) since my last treatment to try to help it from getting worse. Of course that has some side effects too, but they aren’t too bad. I’ve been a bit tired, but that’s finally settled down this weekend. My hands and feet are pretty numb now, but I’m learning to manage pretty well. I think it’s leveled off a bit, the first week seems to hit them pretty hard, then it backs off a bit. It still seems to change daily, some days are better than others. I’ve been trying to continue using my hands an fingers so they can relearn how to work right. Things like my new LEGO Curiosity rover kit, putting together a TV stand and less fun things like getting paperwork situated for taxes and cleaning. Typing is still pretty tough. If I look at the keyboard, I do a lot better but I still seem to miss keys. If I slow down, I’m much more accurate.
I’ve been feeling generally fine as before. The doctor was very happy with my weight last time, mentioning it at least 3 times. We are going to do a scan on the 23rd to check progress and he said he thinks we’ll be happy with what we see. I’ll be happy if it hasn’t grown – I’ll be elated if it’s smaller. I’m getting more settled in to a “normal” life again. I’m planning on spending more time in the office starting next week. Mornings are still slow going, but that should improve with a little practice. It’s been almost 7 months since I’ve had to be presentable every day!
So, 2013 was quite a year…
We’ve been watching Quinn grow quite bit this year. On the outside, she doesn’t look all that different, aside from getting bigger (and heavier). Her little brain has been growing like crazy. So much has happened this year and she’s done a great job coping with so much change and action around home. She’s able to recognize most letters/numbers and even write a few! Her vocabulary has grown quite a bit too. She uses most words right and only has a few that she gets stuck on either meaning or pronunciation. She’s been stuck in the “why?” loop for a few months now but that seems to slowly be getting a bit better. She’s pretty much mastered mommy’s phone and the Netflix app on the Roku. We’ve been amazed at a lot of the things that she’s picked up on. One recent gem was when she said that “Daddy works at the Des Moines Register!” in the proper context of the conversation and everything. That fact is certainly not something that we’re constantly talking about, so she’s been holding on to that for a while. A few months back she started at a new day care and absolutely loves it. She constantly talks about the other kids and what they do all day, it’s great.
We’ve certainly had our share of yuck this year too. Our kitty, Munky, was put down in February. He had been sick for a few days and I took him to the vet. The vet determined he either had relatively advance diabetes or pancreatic cancer and hyperthyroid. It explained a lot of things that we had been seeing over the previous year or so. Our choices were to do insulin, at a pretty significant cost per month that we couldn’t afford, take him home, without planning to treat him, knowing that he would eventually get worse or put him down. We didn’t want to bring him home, knowing he was in pain and we’d eventually have to put him down – that’s not fair to him at all. We chose to put him down that afternoon – the hardest thing I’d ever had to do. He was the first thing that had been in my life for so long (11 years) beside my great grandma, who I had time to mourn before she actually passed (due to alzheimer’s). We decided to have him cremated and returned, which cost quite a bit but we wanted to keep him around. He was a great kitty and we still miss having him around. We’ve decided against another kitty right now because I can breathe a lot better at home and we have enough going on right now that we’d rather not have another thing to worry about. Hopefully we’ll be able to get another someday, but for now we’re not worrying about it.
On May 31st we found my cancer. It’s been a heck of ride since then. I’m still doing well enough, just managing through my treatments. I’ve got my next treatment on Jan. 2, and one more 3 weeks after before I have my first progress/restage scan on this new regimen. I’m anxious to see how it’s working. For the most part I feel much better day to day, but my hands and feet are almost completely numb, so I’ve been adapting to that. If you want to see everything I’ve dealt with this year, feel free to click here.
We’ve also been able to get out a bit this year. It’s been a bit tough with everything going on this year, but we’re trying to make it work anyway. I was able to go to a couple of the autocross events in Marshalltown. Chemo made me have to skip a couple events, but I’m glad I was able to get out as much as I did. I’ve been to Omaha twice, once with a friend to go to Schlotzsky’s and the Strategic Air and Space Museum and once with the family to go to the zoo (and Schlotzsky’s again of course). Quinn loved the zoo and it was also my first time there. We missed out on the train ride, so we had to make up for it by going to Boone and riding the real train there! I also went to Mayo Clinic in Rochester, MN in November with my dad, but that wasn’t much of a recreational trip. We’ve had plenty of trips to see Granny and Papa Hero as well as grandma and grandpas Heeren and Smith. It was good to see much of the Alman family for Christmas this year too.
This is certainly the super short version, we’ve been keeping busy for sure. We’re hopeful that 2014 will be better. Now that we’ve kind of “settled in” to my treatment, we hope things go a bit smoother and we can get sort of back to ‘normal’.