I was diagnosed with testicular cancer in June of 2013. It sucked then and still sucks now. Since the NFL doesn’t wear pink for a month for me, I figured I’d start my own cancer awareness organization to call attention to male-specific cancers like testicular cancer and prostate cancer. Nuts & Butts. Maybe one day we’ll have a fun event to raise money to help beat these awful diseases. The working title for the first one – Revenge of the Nards.
Yes, it’s juvenile, but laughter is the best medicine, right? (No, it’s actually BEP chemo, but let’s not split hairs. Laughter is also good.)
Anyway, the rest of this blog will be about my experiences taking cancer’s lunch money and kicking its ass all over the block.
It’s been awhile since I last posted, so I figured I’d type up a quick update on the many goings-on in the Salm house.
First things first – my post-chemo CT scan came back normal, which is obviously good news. I go back for another in November to make sure there isn’t any recurring suspicious activity, but for now things are good. I’ve been down this road before, and after you get a couple “all clean” scan reports under your belt you start to unclench your keister, but for now it still causes some anxiety.
The other major update since the last post is that the pleural effusion in my lungs (excess liquid) has cleared up and I’m feeling a lot better. Pulmonary embolisms are no joke. For a couple weeks there I could barely walk up the stairs without feeling like I’d just run a marathon. My resting heart rate was 130, I could hardly breathe, and I would drench my sheets in sweat every night. Bad times. I’m much better now. It’s going to take a lot of work to get to where my body is physically able to do the things I could do before, but I’ll get there. Teddy’s a great workout partner. I ran about 200 yards around the track at Glenbard West with him and could barely keep up!
Also, I’m back on blood thinners. This time it’s Coumadin, which multiple people have been kind enough to point out is basically rat poison. Thanks for that. Anyway, it seems to be working out better than the Xarelto, except that I have to get my blood tested constantly so they can dial in the correct dose. I also had to confront my crippling fear of needles (you’d think I’d be over that by now…) and inject myself with Lovenox twice a day for a week. I made a big stink to the Nurse Practitioner about how I wasn’t going to do it (Sorry, Colleen!), but Jenna successfully guilted me into it by bringing up Teddy and Jimmy. In the end, it wasn’t that bad. The first time I did it, I got the needle about a millimeter from my stomach about 20 times before I was able to jab it in, but it was mostly painless. If I ever wanted to start an intravenous drug addiction I guess I could do it now. Silver linings, right?
This also means I can’t really enjoy adult beverages until I’m off the blood thinners in November (hopefully). This isn’t a big deal in the grand scheme of things, but part of getting back to normal is drinking an irresponsible amount of alcohol occasionally, and I can’t do that. Did you know that most social situations are far less interesting without alcohol? It’s true, and I had no idea! How you teetotalers do it is beyond me.
One more thing – we had our annual fantasy football draft recently, and the fellas really outdid themselves. First of all, they were kind enough to have the draft near my house in Glen Ellyn in case I wasn’t feeling great, and then they gave me a friggin’ championship belt (see below for evidence). I guess I’m the Intercontinental Champion of Beating Cancer’s Stupid Ass.
I don’t even know where to begin. It would take me way too long to write this in any sort of interesting way, so I think I’m just going to try to list out all the stuff that’s happened:
As I wrapped up Cycle 3, I started feeling very nauseous. The taste of the saline flush through my IV (yes, you can taste it) made me gag. I couldn’t eat anything. I was fully conditioned to hate anything and everything associated with chemotherapy. Blech.
Starting that Friday and into the weekend I was getting very sick to my stomach. By Sunday morning I was vomiting every couple of hours. None of the anti-nausea meds offered any relief, and even vomiting didn’t help. I felt so sick I couldn’t even lie down flat. I had to be on my back with my knees up.
By Tuesday, I was in the ER. There wasn’t a whole lot they could do, but I was severely dehydrated so they gave me 2L of saline and some IV meds.
The nausea had started to subside after my trip to the ER, but I got a pretty sharp pain in my back, which I assumed to be from lying in the same position for the past 5 days. It made it very hard to breath or cough. I also spiked a fever and the slightest movement caused my heart rate to spike.
By Friday, Dr. Kahn told me to get a CT scan to check for blood clots in my lungs. Sure enough, there were blood clots. And pneumonia. They put me on Xarelto and an antibiotic and sent me on my way. I assumed this would be the last of it. I was wrong.
On Monday I went out to lunch with my dad and Jenna, and developed a little nose bleed. No big deal, right? Wrong. This thing would not stop. After about 45 minutes of constant bleeding, we went to the ER. Unfortunately with a blood thinner like Xarelto, there’s nothing they can really do to stop the bleeding, except take a trip down memory lane to somewhere around the 1400’s. The ER doc came at me with a 6″ long balloon device and just said, “This is going to go in your nose all the way down to the back of your throat.” Uh, ok. I had no idea what was in store for me. He started shoving that thing in and it went on FOREVER. After it was fully inserted he inflated the thing with a syringe. Every muscle in my body contracted, I screamed a couple times, and saw nothing but lightning bolts. Once he was done, it just kept burning and burning, and the pressure was almost unbearable. The first ENT said it would need to stay in for a week due to the blood thinners and my low platelet counts, but there’s no way. I’m off the blood thinner for now and I’m hoping to get this crap out on Friday. It’s horrible. If anyone ever says they want to put a balloon up your nose, you punch that person in the face.
Anyway, Dr. Kahn’s on vacation (I had no idea), so I went in to see Dr. Eisner to follow up on all this. He took me off the Xarelto for the time being, but since pulmonary embolisms are very much life-threatening, he wanted me to get an IVC filter put in place. So, off to surgery. Basically, this is a device where they make an incision on your jugular vein and drop a little umbrella-like object down your inferior vena cava. This will hopefully catch any blood clots before they reach critical areas like the lungs, heart, or brain. Once I’m fully recovered they can remove the device and likely put me back on blood thinners.
Anyway, that should just about bring you up to speed. Sorry it’s not all positive kickassery this time.
Oh wait, there was one piece of good news I forgot to mention:
After I started having the adverse stomach reactions to Cycle 3, Dr. Kahn decided to reach out to the one and only, Dr. Larry Einhorn (if you recall, he’s the inventor of this testicular cancer treatment and widely regarded as the guru of the industry). Dr. Kahn shared with him my disease details and the treatment I’ve received so far, and Dr. Einhorn responded that he is “very comfortable” with me not doing a 4th cycle. That was absolutely phenomenal news to hear, but unfortunately basically every day since then has been one disaster after another.
So, at least for now, there’s no 4th chemo cycle. I just need to get this crap out of my nose, get the blood clots under control, and hope the pneumonia is just a little blip and my lungs go back to normal.
Some stuff to unclog my port, which also necessitated an IV in my arm to get my labs and pre-meds going so I wouldn’t be stuck here until 7PM. I do hate getting poked, but I suppose I’m getting used to it.
Nurse: Anu
If you’re very observant, you may notice something different in the Drugs section up top there. Did you see it? No bleomycin. I had a pulmonary function test last Thursday, along with a chest X-Ray, and the PFT showed a significant decrease in my Carbon Monoxide Diffusion Level (down 34% from baseline). Given that decrease, Dr. Kahn decided to take bleo out of my regimen to hopefully prevent permanent damage to my lungs. Unfortunately, this means I will need a 4th cycle of the other 2 drugs. Apparently this happens in about 15% of patients, so it’s not totally uncommon, but it would have been nice for the odds to play out in my favor for once.
This news has put me into a very dark place mentally. I was all set for this to be my last cycle and be completely done by the 25th. Now, I’ll have another 5 straight days of this garbage and won’t be done until August 5th. If the alternative is dragging around an oxygen tank for the rest of my life, obviously I’ll choose the 4th cycle, but at this point it feels like I’m getting the worst of both worlds. I’ve already done 2 cycles of bleo and damaged my lungs, AND I have to get a 4th cycle of the other drugs that also cause nasty side effects that may be permanent. So, basically, F this S in the A.
But enough feeling sorry for myself. I wanted to give a shout-out to a little dude named Benjamin who’s got it worse than I do. His family set up a Facebook page for him at Brave for Benjamin. He’s going through some really extensive chemotherapy for leukemia, and he’s just a little kid! If he can do it, what’s an extra cycle for me? Yeah, it’s disappointing, but I’m a grown-ass man. If Benjamin can do it, then who am I to complain?
One other thing you may notice up top that felt apropos today – my t-shirt. It’s an old Tiger Football shirt that I’ve been wearing since about 1995. The message on this shirt, which was also the motto of our team for the four years I was there, is “Never Give Up.” I know Benjamin and his family aren’t going to give up, and obviously neither am I. Besides “Z’s in the knees,” it’s probably the most useful thing I learned playing ball. Two claps!
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.
Forgot the selfie today. If you’re wondering, I look the same as yesterday, but I’m wearing a different t-shirt.
Drugs:
Prevacid
Kytril 1mg for nausea
Saline drip (1000 ml)
Dexamethasone 4mg IV
Etoposide and Cisplatin chemo
Lasix IV 20ml
Nurse: Colleen
Had a mostly uneventful day. Treatment went by pretty quickly (so quickly that I left before my lunch showed up, but thankfully it was able to go to another patient who didn’t get to order any). Got home, took a nap, watched the Cubs get swept by the Cardinals (boo). Romberg showed up with dinner and a visit, so that was good. I got to bitch about something besides chemo for a while, which is always nice. If you know me, you probably know I thoroughly enjoy complaining about things.
Speaking of, I need to rant a little bit. Eric and I own a business together, which most of you reading this probably know. We promote that business via social media, and part of that is setting up a Facebook Page for Business. Over the years, Facebook has changed their algorithm so we have to pay to promote posts otherwise our fans won’t see them. It’s annoying, but it’s the way the world works. However, there are a couple classes of businesses that skate around this and clog my Timeline with incessant ads: Realtors and #BossBabes.
If you want to sell things via social media, start a Business Page. I don’t want to unfriend/unfollow people I genuinely like because all I see are ads for skincare or real estate postings. Please, for the love of all that is decent, just start a Business Page. You can invite all of your friends to like it, and the ones who are interested in joining your team or getting younger-looking skin in 6 weeks will like it. The ones who just want to keep up with you on a personal level won’t be inundated with spam.
OK, glad I got that off my chest. If I offended anyone who sells R+F, I apologize. Blame it on the toxic chemicals coursing through my veins. But also know you’re annoying the hell out of cancer patients who have nothing to do all day but look at Facebook 🙂
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.
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.
It’s been awhile since I last posted. There were some dark days in there. Nothing too horrible from a side effect perspective, but it’s been an emotional roller coaster, and I just couldn’t write. I think I subconsciously felt like this would all be over faster if more time passed between posts. Anyway, the days have been spent clearing cobwebs out of my brain and doing a lot of laying around.
Oh, one side effect I’ve noticed: #chemofarts. Yeah, they get their own hashtag. Friggin brutal. But I get to do it with impunity because cancer. Silver linings.
During each cycle, you reach a point called “nadir” where your counts are at their lowest. I’ve read it can often be between days 8 – 14. For me it might have been 11 and 12. I managed to make it into work on Day 11 for a few hours, but couldn’t muster the energy on Day 12. Eric and Kyle brought over Burger Joint for lunch and then Kyle shaved my head. Despite my rapidly receding hairline, it’s kind of badass.
Unbelievably, I actually woke up today (Day 13) feeling mostly normal. Still tired, but not too bad.
Some highlights from Day 13:
Had a visit from my friend, Fitz and his son, Wells. They brought an awesome care package from Manny’s Cafeteria & Delicatessen, plus some fun stuff for Teddy. Wells crushed homers in the backyard from both sides of the plate.
Mowed my lawn in 90 degree heat like a suburban bawss. Fueled by pastrami.
Cubs mashed.
All in all, a nice little Saturday. Last day of Cycle 1 on Monday then the fun starts all over again.
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.
nutsandbutts 