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’.
Last Wednesday I did my second cycle of my new chemo. After three weeks of gauging the first cycle, I had a good handle on the side effects. I discussed them with Amy and she said I’m getting boring. We do need to keep an eye on the neuropathy since the nerve damage takes so long to heal. Dr. Buroker doesn’t want it to get so bad that I can’t type or walk.
My blood looked good, so he sent me upstairs to do another treatment. Everything went pretty well, as expected. I chatted with my nurse about treatment and other random stuff which made the time go even faster. Oncology nurses certainly are a different breed, it’s quite nice. I was off all week so I was able to just come home and relax.
This time around the neuropathy has flared up quite a bit. The first treatment left me a bit dull in the fingers and pretty much numb from the balls of my feet forward. Now, a week in to #2, my fingers are pretty much completely numb even down into my hand a bit. My feet are numb back to my heels. For some reason, my left side seems slightly worse than my right. It has improved a bit since the first few days where it kind of went up my arm a bit. I also had the joint/muscle aches like I did the first time. Instead of a day or so I had them for about 3 or 4 days starting a few days after treatment. It’s a really weird thing, random parts just hurt or ache and you feel about 50 years older than normal. I’d notice it in my fingers and wrist as well as my knees and hips, but not specifically in the joint all the time. Sometimes it felt like it was where the muscle attached to the bone.
The hardest part of this treatment is certainly the neuropathy. It’s difficult to comfortably type. It doesn’t “hurt”, it’s just hard to do it properly. As long as I hit the keys directly, it’s not so bad – but if I graze/brush over them, the sensation is pretty yucky. Typing this post is taking a bit longer than usual, but not too much. I’m getting used to how I need to type now. At first I was missing letters in words quite often because I couldn’t feel the keys bottom out. Now I mostly deal with misaimed hits that fall between letters. If I slow down a bit, my accuracy improves but the sensation still makes typing less fun. Walking can make my feet sore. I’m not sure if it’s due to compensation or just a factor of the nerve tissue trauma. My feet feel like I’m wearing a few pairs of thick socks, but wrapped in duct tape tightly… if that makes any sense. Heat seems to help the discomfort a bit but I also pace around the house a bit to “loosen” everything up. My toes, even though numb, still feel like there is cardboard between each one. Nerves take a long time to heal, so even if we pull back the dose, it could still be a few months or more before I was back to normal. I’m hoping it doesn’t get worse – I don’t want to pull back the dose if we can help it, but at the same time I need my hands and feet to work too…
I’ve also had a bit of mucositis, not so bad that I’ve had mouth sores, but enough to make itself known. I had it last time as well, but it seemed to only last a couple days. This time it’s been about 4 or 5. I get a nasty taste in my mouth as layers of my mouth/gums slough off. It also seems to affect my tastebuds, stuff just doesn’t taste right… usually more bland or just not good. Now about a week in, that’s all mostly gone so food tastes mostly “normal” again. I noticed I was eating a bit less so I’ve lost a few pounds, so I’ll be keeping an eye on that but I’m not concerned at this point.
My feeding tube site has been healing up nicely. It’s been a bit sore on and off as it’s healing up, but I think that makes sense. The home health care people came and picked up the pump and IV pole but I still have 9 case of food and some other supplies left over that I’ll probably be donating to my nutritionist for her to give to people who don’t have insurance. Even if I need it again in the future, I’d rather someone use it now before it goes bad since I have insurance to help me afford it.
Sorry for the delay in updates, I’ve been busy with holiday things and the thought of typing a long post like this wasn’t really a favorite idea the last week or so. I’ll update again after my next treatment after the first of the year unless anything else develops.
Quinn had her 3rd birthday party right before Thanksgiving and we had a heck of a turnout. I don’t think we’ve ever had so many people in our house. She even had some friends from day care come out! She got all kinds of goodies from everyone that will keep her busy for quite a while. I didn’t really get any great photos due to the number of people and not feeling super great from my chemo. She was pretty excited to see everyone. Birthdays are starting to get fun because she’s understanding quite a bit more of what’s going on. Thanks again to everyone who made it out!