Drugs:

• Prevacid
• Aloxi for nausea (should last 3 days)
• Saline drip (1000 ml)
• Dexamethasone 4mg IV
• Etoposide and Cisplatin chemo
• Some random stuff to get my blood flowing through the port since it was a little clogged

Nurse: Anu, with an assist from Katelyn on the port

Had a little trouble getting the port started this morning as the saline was able to go in, but no blood was coming back out. Took about an hour to get that sorted out, but fortunately it ended up working. The alternative if it didn’t work was possibly replacing the port, which would not be a good thing.

Treatment was the same as always. The good news is, I’M HALFWAY DONE! That’s right, today marks the halfway point in my treatment (knock on wood, fingers crossed, throw salt, whatever). It actually feels like I’m more than halfway since 4 of my remaining 10 days will be Bleomycin-only days, which are pretty short treatment days.

I obviously don’t want to get ahead of myself here, because nasty side effects can always pop up at any moment, but here’s my philosophy:

Plan for the worst, but expect the best.

I decided before treatment started that I was going to do my best not to worry about it. Yes, we’ll be prepared with whatever medications I might need for complications that may arise, but it does absolutely no good to sit around worrying about what might happen or horror stories you’ve heard or read about online. Just expect the best, and when something comes up, deal with it. So far, this has served me well.

Other notes from today: I inexplicably started craving Burritos Tapatios, so I had that for lunch. Probably not the best idea, but the heart wants what it wants. My friend, Jeff, stopped by with some pizza for dinner and a visit, and then my brother came by to help with the kids’ bedtime. That’s a particularly tough time of the day for Jenna, so it’s always great when he can come by and play with Teddy or give Jimmy his bottle.

Another thought for the day: when the going gets tough, lean on your family.

Drugs:

• Prevacid
• Kytril for nausea
• Saline drip
• Etoposide and Cisplatin chemo
• Lasix

Nurse: Colleen

Well, the night of Day 1 was pretty uneventful. No major side effects. Had a late start (11:30AM) for day 2, which was really nice since I got to go to Teddy’s basketball class. I had a few pointers for him afterwards since he hasn’t really grasped the concept of defense yet. We’ll work on it.

Anyway, Day 2 started pretty well with a better room. Got a window view and an extra table. I’m straight ballin’ in here, if you couldn’t tell from the photo up top. My nurse, Colleen, actually came from NMH and knows Dr. Stein very well. We had a good long chat, and it was nice to have that connection since she knows all the little differences between the two facilities. One difference I’m a bit apprehensive about is not getting Dex everyday here like I did at NMH. I’m sure there are good reasons for both methods, but I figure since Cycle 1 went well for me (no nausea), why fix it if it ain’t broke? So, no Dex today, so we’ll see how tonight goes. I’m all about getting as many prescriptions as possible. If it’s going to prevent misery, GIVE IT TO ME.

Also of note today, my buddy Jayson stopped by with some lunch. It was good to chat for a bit and feel somewhat social.

Back to work and my Newtons.

Cycle 2, Day 1

Drugs:

• Prevacid
• Dexamethosone
• Kytril for nausea instead of Zofran, but in the same family
• Emend
• Benadryl & Tylenol
• Saline drip
• Bleoymycin, Etoposide and Cisplatin chemo
• Additional saline post-chemo to flush kidneys

Nurse: Katelyn

I’m coming to you live from the Northwestern Medicine Cancer Center in beautiful Warrenville, IL (right by the Lifetime Fitness for those of you familiar with the western ‘burbs). This is technically my second day here, but it’s really my first full day as last week was just a bleo day.

Some notes about last Monday: The day went really smoothly, and it felt like I was leaving before I even got settled in. Since I was feeling pretty good, Jenna and I went to the Schmaltz Deli in Naperville and I housed a pastrami sandwich and part of Jenna’s Reuben.

After we got home, I went down to the basement to take a quick nap, and that’s when the fever set in. I was shivering under a blanket for about 45 minutes before I mustered the energy to move my arm about 18 inches  to grab my phone so I could text Jenna, “Help. I’m freezing.” At that point, my fever was only at 99.2, so I swallowed a couple more Tylenols, took a long, hot shower, and climbed into bed. An hour later and I was at 102.2, which is well above the “Alert your doctor” temp of 100.5, and getting into “Go to the Emergency Room” territory.

We called the on-call doctor, and she said it would probably be safest to go to the ER, but since I wasn’t experiencing any other signs of infection I could stay home if Tylenol brought it down. Well I wasn’t about to go to the ER, so I took some more Tylenol and used some Jedi mind tricks to bring the fever down. Within an hour and a half it was back to 99. Crisis averted.

I know it sounds crazy to go to the ER for a fever, but when you’re on chemo they want to make sure you don’t have an infection that your immune system can’t fight. After a brief consultation with Dr. Google, I learned a lot of people have a similar reaction to Bleoymycin, and taking some Dex (a steroid) on these Bleo-only days can help.

Anyway, I felt almost normal all week/weekend. Jenna and I went out to dinner Friday night, I stopped by the Jack Kicks Cancer 3v3 soccer tourney before hosting Jenna’s parents for dinner at our house, and then Jenna threw a little Luau for Father’s Day in our backyard. Oh, we also went to Port Edward, a fun nautical-themed restaurant that feels vacationy, for lunch on Sunday. And I mowed my lawn again. Kind of a busy weekend.

Oh, and if you couldn’t tell from the photo up top, my hair started falling out so I shaved it. I was in the shower on Tuesday, rubbed my hands on my head, and when I looked down they were covered in hair. A couple days later I noticed the same thing with my facial hair. It’s not a big deal to me to lose my hair, but it was a little unsettling to see it come out on my hands like that. Oh well. I still instinctively reach for the shampoo in the shower.

To make a long story longer, I’m now getting my Cycle 2, Day 1 treatment. We’ll see how it goes, but I’m hoping/expecting that my symptoms will remain under control during these next two cycles. I’ll probably get even more tired, but if that’s the worst of it, that’s ok. Keep your fingers crossed for no crazy, unexpected side effects.

There are some differences with treatment here versus NMH. First, the days are much longer. I used to be out of treatment on Mondays in about 4 hours, but I’ll be here from 9:30 – 5:30 today. Crazy. Part of it is they want to give me an extra liter of saline after my treatment, which takes about an hour. Besides that, there seems to be more lag time here in switching my IV bags, getting medicine, et. I’ve also been told not to take Tylenol and Benadryl throughout the day on my bleo days, which is different. Hopefully I don’t spike another big fever because of it. We’ll see. I’m sure these are minor issues, but anytime there are differences in care, it makes me a little nervous.

All right, back to my saline drip.

Drugs:

• Prevacid
• Dexamethosone
• Aloxi, instead of Zofran for nausea (longer-lasting to cover me for the weekend)
• Lasix (diuretic)
• Saline drip
• Etoposide and Cisplatin chemo
• Benadryl (to help sleep)
• Compazine over the weekend

Nurse: Charlotte

Prior to Friday’s treatment, I finally got a good night’s sleep thanks to some Benadryl and Jimmy not waking up at all. Also got an unprompted “That’s what she said” joke out of the receptionist this morning when describing how to self-validate parking (“Just insert there.”). That was kind of awesome.

Didn’t gain any more weight today, but I’m still 10lbs up over baseline. I’ve also completely lost my voice. Probably due to, oh I don’t know, pumping my body full of toxic poison all week. Just a hunch.

So, our plumbing issues got significantly worse. The entire upstairs bathroom needs to be re-piped, which should happen on Monday thanks to a lot of rescheduling by Lifeline Plumbing (everyone cross all your fingers that this gets done). That made the weekend a lot tougher, since our other bathroom is literally in the farthest corner of our house from our bedroom. I know, first world problems, but it’s a huge pain in the ass when you’re waking up all night to go to the bathroom and stairs are the last thing you want to deal with. The giant hole in my kitchen ceiling started feeling like a metaphor for my life right now. Not a good feeling.

Speaking of not good feelings, after treatment, the mental impact of all of this really started to hit me. I wasn’t prepared for it at all. The combination of steroids, chemo drugs, stress, and frustration just all hit me at once and I started getting some pretty wild mood swings. It’s hard to call them swings exactly, since they never swung over to the positive direction. Mostly just mood troughs.

The rest of the weekend was fairly uneventful. Lots of down moments, but also a couple positives. I spent some time in the hammock listening to Hawaiian music pretending I was back on our Maui honeymoon. I managed to go for a couple walks around the block. Got some great couch time in watching the Cubs.

Teddy got to have a fun day and sleepover with his cousins on Saturday. We were a little worried he was going to freak out at night, but it sounds like everything went great. Soccer, Chili’s, dance parties, and sleeping in “nests” in Calvin’s room. Brother-in-law Chris brought over some dinner for us Saturday night as well.

My parents came back down yesterday afternoon, which is always nice. They’ve been a huge help so far with driving, taking care of the kids, cooking, cleaning, etc. The biggest lesson I’ve learned in all this so far is it would be impossible to face cancer alone. This is truly an “all hands on deck” type of situation, and I’ve really appreciated all the support so far. When you sit in the chemo ward everyday, you notice some people are mostly doing it on their own.

Pain/Side Effects on a Scale of 0 to Mel Gibson’s Final Scene in “Braveheart”:

Day 4 gets a 4. Major mental issues. The weekend gets a 2.5.

Drugs:

• Prevacid
• Decadron
• Emend for nausea
• Zofran for nausea
• Lasix (diuretic)
• Tylenol
• Saline drip
• Etoposide and Cisplatin chemo
• Benadryl (to help sleep)

Nurse: Meg

Gained another 5 lbs overnight. They gave me a diuretic called Lasix in my IV, which caused me to urinate profusely every 15 minutes for about an hour. That definitely helped.

Had a mild headache, probably from waking up at 4:30 in the morning. Nothing some Tylenol couldn’t fix.

Two pieces of unrelated bad news from today: First, we sprung a leak in the kitchen ceiling, from either the shower or toilet (or both?) above. Awesome. Our contractor, Leigh, is on it. Second, my favorite moccasin store on Roosevelt Rd is closing! NOOOOOO! Must get moccasins while I still can!

Anyway, back to treatment. My friend, Cat, stopped by for a visit in the afternoon. It’s been a few years since we’ve caught up, so that was nice. If there’s anything positive about this disease, it’s that people are very willing to let you know they care about you. That’s a good feeling whether you’re sick or not, so definitely something to remember.

One thing I started to notice after I got home is my brain is super fuzzy. I apologize if the quality of writing is starting to go down a bit, but it’s just hard to focus. It’s actually even getting harder for my eyes to focus. Fortunately, by the evening I had a bit more energy and was able to fly Teddy around like Superman for a bit before bedtime.

Speaking of Teddy, he’s acting out a little bit lately. He doesn’t seem to know anything’s wrong, but maybe subconsciously he knows something’s up. I told him he could ask me any questions he wanted, and he didn’t have any. A few minutes later he told Jenna that he had a question for me. “There’s a scary guy and he pooped on me.” Ok then.

On the topic of Jenna, I feel I need to give her some props, both because I love her very much, and also because she’s feeling a little nervous that I’m surrounded by almost exclusively blond nurses all day every day. She’s been doing an amazing job balancing caring for me, caring for the kids, keeping up the schedule, and squeezing in all the work she can at all hours of the night. It hasn’t been easy, and I really appreciate it. I’m sure it’s going to get harder before it gets easier, so I hope she’s got the stamina for it. Oh, and I’m sure she’d want me to mention the dessert sampler plate she made me last night. Little bite size pieces of carrot cake, cheesecake, apple pie, lemon bar, and a cookie, because I couldn’t decide on one that I wanted. That’s love right there.

Pain/Side Effects on a Scale of 0 to Mel Gibson’s Final Scene in “Braveheart”:

Day 3 gets a 2. Less energy today, but I’m still kicking ass.

On to Day 4, and then the weekend. Go Cubbies!

Day 2 is in the books.

Drug Regimen:

• Prevacid
• Decadron (steroid for nausea, but sounds like an evil Transformer)
• Emend for nausea
• Zofran for nausea
• Saline drip
• Etoposide and Cisplatin chemo

Nurse: Julia

Side Effects:

• Swelling/bloating
• Minor pins and needles in my right foot on the drive home
• Minor restlessness during the night
• Face is a bit flushed from the steroids

Woke up feeling mostly normal and spent the requisite 1:45 in the car on 290. Found out I gained 5 lbs overnight. I was really counting on chemo as a convenient weight loss plan, but apparently a lot of people actually gain weight. Imagine that. Hopefully it’s just water weight from all the fluids, steroids, and everything else they’re pumping through me. I do consider myself very fortunate that I haven’t experienced any nausea yet. Fingers and toes crossed that continues.

Around mid-afternoon I started to feel incredibly swollen. Like Matthew Perry during his coke-free “Friends” years (I hopped in the Wayback Machine for that reference). My stomach, arms, hands, and legs all felt super tight.

The drive home was mercifully quicker (only an hour fifteen), and the weather was gorgeous, so I spent some quality time in the hammock in my backyard, at least until the mosquitoes discovered me.

Post hammocking, I actually felt well enough to go out to a dinner with my dad and some friends/colleagues, but I could barely get my jeans on due to all the swelling. I did manage to house some rigatoni though.

Pain/Side Effects on Scale of 0 to Mel Gibson’s Final Scene in “Braveheart”:

Day 2 gets another 1. Plenty of energy, no nausea, but bloated and swollen.

Next up, you guessed it, Day 3 (where I am right now, typing this, from the future).