Author: cgsalm

Chemo Cycle 1, Day 3: Settling In

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(In my best Jeff Foxworthy voice) If the necks of all your shirts are stretched out from accessing your port… You might be a cancer patient!

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!

Chemo Cycle 1, Day 2: StayPuft

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The Brahma Bull is my spirit animal.

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.

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The rest of you suckers are at work.

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).

Deep Thought of the Day

In 1974, Dr. Larry Einhorn of Indiana University developed a cure for testicular cancer. Prior to his research, the disease was mostly a death sentence. Now, it’s highly treatable and curable.

42 years. That’s how long this treatment has been in place. That seems like a long time in the world of modern medicine, right? I wasn’t even born 42 years ago. But think about it in terms of the length of time the human race has existed.

How many men died from testicular cancer in the roughly 200,000 years prior to Dr. Einhorn’s research? When you think about it like that, I’M SO LUCKY! The likelihood that I was born and got this disease after 1974 is only .021%, or 1 in 4,761. 

Crazy.

And so it begins. Chemo Cycle 1, Day 1.

Chemo Day 1 macho man
I’m only interested in doing 2 things: eating Mac ‘N Cheese and kicking cancer in the butthole. And I’m just about done with my Mac ‘N Cheese.

Day 1 is officially in the books (and I’m actually sitting here getting Day 2 treatment as I write this, so I’m basically in the future).

The first day kicked off with an early wake-up, 2 hours of traffic, and a visit with the nurse practitioner, Lisa. She went through over an hours’ worth of possible side effects, drugs, and other assorted tidbits of information that went in one ear and out the other. Good thing Jenna was there taking notes (my dad was also there, but he may or may not have been paying attention). I won’t bore you with all the details of the side effects as you’ve likely heard them all, although the one new one for me was the possibility of my fingernails turning black and falling off. Hope that doesn’t happen.

In the middle of this delightful conversation, another nurse came in and accessed my port for the first time (I wonder if that’s a euphemism for sex in cancer circles?). I was a bit nervous about this since the area was still a little tender and she was coming at me with what looked like either an unbent paperclip or a straightened out fish hook. Turned out to be about a half second of pinching and that was it. Way better than getting an IV in my arm every day.

After all this, they led me back to the treatment center, which is basically just a room with about 20 recliners surrounding a nurse’s station. Each recliner has a little table and a chair or two for visitors. The nurses have all been great. Big ups to Meg and Julia so far. They don’t have an easy job, but they’re always smiling.

DIGRESSION ALERT: Prepare yourself for some minor bitching. After spending time in both the maternity ward and the fertility clinic (henceforth known as the Masturbatorium) at NMH, I’m a bit disappointed with the amenities of the chemo ward. Patients are here all day every day, often in considerable pain, and I think they could do a lot better with the setup and creature comforts. First, it’s on the 21st floor off of Michigan Avenue, but all the chairs face in towards the nurse’s station. What’s the point of great city views when they’re always behind you? Secondly, unless you have someone with you, it’s not really possible to get any food. After the all-you-can-eat room service and constant what-can-we-get-you’s of the maternity ward, I was expecting a little more here. Finally, there’s absolutely no privacy, and other people’s visitors can tend to get a bit noisy. Coupled with the glaring fluorescent lights, it’s not quite the calming, peaceful facility I was hoping for. I think I’m going to just sit here and watch this Zen garden mediation video on YouTube.

OK, with that minor rant over, back to treatment. Into the IV went a large bag of saline, a steroid for nausea, Zofarin for nausea, and some electrolytes. They declined my request for a pina colada. These pre-treatment fluids took I think about 2 hours.

Then came the first of the three chemo drugs in my specific BEP cocktail, Bleomycin. This one lasted about 15 minutes, and also came with some Tylenol and Benadryl to help prevent a fever. So far, so good.  I don’t know what I was expecting, but whatever it was, it didn’t happen. Next up was the E, Etoposide. This one was about an hour. Again, no noticeable effects, although I was getting pretty tired from the Benadryl. Finally, they finished me off with about an hour of P, Cisplatin (why P instead of C, I don’t know). This one supposedly causes the most side effects and requires the most fluids to prevent damage to the kidneys.

On that note, remember how I mentioned the nurses don’t have an easy job? Well one of their jobs is to measure my urine outflow. I had to pee in a plastic jug all day and they’d come in and measure it to make sure I was getting enough fluids through my system. That reminds me, I should probably drink some water right about now.

After that, I was done. Just in time to sit in traffic for 2 hours, and of course 5 minutes after we left I had to piss like a racehorse. We managed to pull off 290 around Berwyn in a sketchy neighborhood so I could pee at a gas station. I could only pray that purple wasn’t the local gang color as I strolled in wearing my Zubaz pants and Macho Man t-shirt. No gangland executions, but I did get some funny looks.

Day 1 Pain/Side Effects on a scale of 0 to Mel Gibson’s Final Scene in Braveheart:

I’ll put it at a 1 today. Tired and loopy from Benadryl.

Other Observations:

  • 290 is the absolute worst. 3.5 hours in traffic on treatment days is not cool. Get your shit together, Chicago.
  • Most of the other people in here are pretty old, and some don’t seem to be doing too well. There was a young woman sitting in the chair next to me who looked to be fairly far along in her treatment who was very positive and cheerful. I hope that’s how I am when I get into the next couple cycles.

On to Day 2, and continued domination. Oooh yeah!

 

 

Deep Thought of the Day

I’m a couple St. Bernardus Abt 12s in enjoying my last days of normalcy for awhile, and had a thought:

Every experience I write about is in the past. It’s already done.

That’s a comforting feeling. I read another testicular cancer blog all the way through from diagnosis to completion of treatment and felt a twinge of envy when I got to his last cancer-free post. I’m very glad his story ended happily, I just wished I was already there as well.

I’m at the beginning (relatively) of my journey now, but someday I’ll look back at these first posts with a sense of accomplishment rather than trepidation.

PS – That other blog I mentioned, as well as talking with friends who have been through similar situations, has already helped me a lot, and that’s why I’m sharing my experiences. And also because I like being the center of attention. But mostly the first thing.

 

 

 

Mini Updates Before Treatment Begins

Just a couple mini updates for y’all, which I’ll probably spend 2,000 words detailing. Concise, I am not.

Schedule:

First chemo treatment is scheduled for Tuesday, with a visit with the doc and some labs beforehand. I’ve been told to expect about a 6 hour day. Anyone have any good book/movie/TV recommendations? I’m thinking I can bang out just about all the Matt Christopher books.

Remainder of Cycle 1 is Wednesday – Friday, the following Monday, and then I believe the next Monday as well. You’ll have to ask Jenna.

Pro Tip #?:

In the unlikely event you ever get cancer (and I really hope you don’t), I’ve found it’s a HUGE help to have someone close to you handle the logistics. My wife, Jenna, has been all over this since Day 1, and it’s been a big weight off my shoulders for a couple reasons.

First of all, my brain isn’t totally working right now due to the constant onslaught of shit news. When I start hearing things I don’t like, my brain tends to tune them out. It’s probably some sort of primitive self-defense mechanism, but it’s not great for remembering little details. Secondly, nobody hates logistics more than me. Jenna claims to hate them too, but she has a unique talent for scheduling things, keeping tabs on the progress of various lists, and just generally TCB’ing (that’s “Taking Care of Business” in case you didn’t know). She even has her own self-devised system of checkboxes and what-not. Anyway, it’s been a big help, and it’s one more thing I don’t have to deal with. So yeah, besides going back to work, raising an infant and a toddler, pumping breast milk at every opportunity, keeping up the house, scheduling treatments and ferrying me to and fro she doesn’t have a whole lot going on right now…

My Visit to the Masturbatorium:

Note: Prudish female relatives, read on at your own risk.

I believe that’s the technical term for fertility clinic, yes? What an odd morning. First, I managed to convince the doctor not to stick me with a needle since I’ll be getting labs on Tuesday anyway. Win. Next, I met a swarthy, bewigged man named Conrad who led me to a tiny room for the purpose of filling as much of a highball glass with semen as I could muster. Do they really need 8 oz cups for this? Who’s filling those?

Conrad: Here is your remote. Do not touch any buttons above the tape.

So, the remote was literally inside a Ziploc baggie, which I can only assume (hope) they change between “patients.” I’m sure they do; it was a fancy place with free Keurig coffee and classical music and stuff. Also, what happens if I press those other buttons???? 

The rest was uneventful, although I will say it was a little difficult when the time came to actually corral the specimen. Feel free to use your imagination as to why. Or don’t. Actually, don’t. It was also extremely awkward handing Conrad my cup afterwards. The silent judgment in his eyes filled the Andrology Lab. I WAS DEHYDRATED, CONRAD! 

Anyway, treatment starts next week. I’ll do my best to keep up the updates since I’m really doing this for anyone who stumbles across this looking for answers during their own time of great stress and uncertainty. But I’m warning you now, be prepared for far fewer semen jokes over the next couple months.

 

 

The story up ’til now

Day minus-1068

June 7, 2013. I had been feeling some mild discomfort in my left testicle that I attributed to basketball. My wife had made a comment some number of unspecified months prior that my nut was kind of big. As I didn’t really have a primary care physician, I went online to the Northwestern Medicine website to find a urologist and schedule an appointment just for some peace of mind. I didn’t even tell Jenna. I was so sure it was nothing that I had a haircut scheduled for an hour after the appointment, and was planning on going to the gym. Plans changed.

Upon being called in from the waiting room, an attractive young woman asked me to remove my pants (insert predictable joke here). She felt around a bit, raised an eyebrow, and told me the doctor would have to take a look.

Me: It’s fine though, right?

Her: I’m just going to get the doctor.

My heart rate spiked.

The urologist, Dr. Dalton, came in a few minutes later, felt my testicle, and deadpanned, “Oh, that’s not good.” That might sound like poor bedside manner, but it didn’t come across that way. Dr. Dalton has a certain calming confidence that really reassured me through those first horrible moments.

The next few minutes were a blur, but the one thing I heard was, “I’m 95% sure this is cancer.” Oh shit. He brought me to his office where I called Jenna at work. I could barely choke out the words, “I need you to come to the hospital, I think I have cancer” (or something very close to that). She was shocked, of course, but was there almost instantly.

There was some amount of impatience and worrying as I sat downstairs in the ultrasound waiting room. It’s such a surreal feeling to watch others going about their days while you feel like your life is crumbling around you. Anyway, the ultrasound all but confirmed the cancer. I was informed it was too invasive to take a biopsy of the testicle so they would simply remove it and test it after the fact. I’ve got two of them, so what the hell, right?

Back to Dr. Dalton’s office. Scheduled for surgery the next day. Went home, hugged my 5-month old son Teddy as I sat on the edge of my bed and tried to fight back tears. Called my mom, “I have cancer,” and cried some more.

The next afternoon I was in surgery. My family was there. My brother and his girlfriend came. They’re now engaged and I’ll be the best man. That’s cool. Surgery went smoothly, and when I came to, I had one fewer testicle than before, and I was wearing a jock strap with a gauze merkin. It was hard to pee, but the alternative was a catheter, so pee I did. I felt a significant sense of relief because I had taken the first step in beating cancer. I was now at least on the right path.

The next two weeks were spent relatively pain free but in mental anguish. I had to wait for a CT scan to check whether the cancer had spread which would determine what my next course of treatment would be. The waiting and the worrying, I discovered, would often be the worst part.

Finally, the results came in after testing the tumor and my CT. Pure seminoma, tumor was 4cm. When they tell you to check for lumps, that’s a little misleading (at least in my experience). I never had a “lump”. My testicle just seemed to be a bit larger. I always imagined a tumor would feel like a barnacle on the hull of a ship or something, but it grew from the inside more or less uniformly. The point is, if you ever feel anything out of the ordinary, have the doctor check it out. Better safe than sorry.

The results of the CT seemed good. It didn’t look like the cancer had spread, so I had a couple options. The first option was to do radiation for 28 days. The second option was close surveillance. The radiation oncologist seemed to think radiation was the best path (when your only tool is a hammer, every problem looks like a nail), and my medical oncologist, Dr. Stein, thought surveillance was in order. She took my case to the hospital’s cancer board and they concurred that surveillance was an appropriate option at that juncture as the prognosis would be effectively the same if the cancer ever did rear its ugly head again.

Fast-forward 2 years and 11 months:

I went in for my 3-year scan (at this point in the program, scans are annual). They had become routine, but annoying. Every scan I take turns into a race home to make it to a bathroom before the 2 pints of barium attempt to vacate my body with extreme prejudice. Since my scans are in Chicago and I live in Glen Ellyn (~30 miles), I do my best to time them around minimal traffic. Yeah, right.

Anyway, back to the scan.

I was feeling confident that cancer was a thing of the past, and these scans were a mere formality. I spoke with a gentleman in the waiting room who was up from Florida to try to get a stem cell treatment to cure some sort of autoimmune disease that had robbed him of almost all mobility and put him on life support multiple times. After 15 years of pain and disappointment he sounded ready to give up, but the fact that he was there seeking revolutionary treatment implied otherwise. As I left to get my scan, I said goodbye and told him, “Hey, at least Chicago’s a great place to be in the summer.” I hope he’s ok and his treatment works.

My scan was the easiest one so far. Almost no extra waiting. Unfortunately, the phone call I received at 5:20PM the next day was anything but easy. My doctor called to inform me that there were multiple enlarged lymph nodes near the rear of my abdomen, and it was almost certainly a recurrence of my cancer.

My body started shutting down and I could hardly hear what she was saying. I did my best to scribble notes on a piece of scrap paper. They ended up all over the page, barely legible. 2.2cm and 2.4cm. Treatment is chemo. No organ involvement. PET scan to confirm.

I drove home, and knew I probably shouldn’t have been driving. Thankfully, I made it without incident. It was a beautiful spring day, and my wife was in the backyard holding our two-month old son while playing baseball with 3-year old Teddy. I broke the news to her, and we fought back tears as we yelled, “Go Anthony Rizzo, Go!” to Teddy rounding the bases. Just as I did nearly 3 years before, I picked him up and gave him a big hug. He just wanted to get back to hitting home runs.

This kicked off a three-week barrage of doctor visits, tests, procedures, and waiting. Here’s what’s happened  so far:

PET scan:

Went in the following Tuesday (got the news the previous Wednesday evening) at 6:30AM for a scan. I had a quick injection of some sort of radioactive glucose and then sat quietly for about an hour. I even managed to fall asleep. Then they slid me into the machine, and I had to hold completely still for about a half hour. Fell asleep again. Told Teddy I got some radioactive superpowers like Spider-Man.

Bloodwork:

Followed the PET with some bloodwork at Dr. Stein’s office. I wasn’t able to see her again until 5PM, so my dad, Jenna, and I did a little Ferris Bueller’s Day Off in Chicago. We ate some breakfast and walked down to the Art Institute and enjoyed some Rembrandt’s, Monet’s, and Manet’s. Walked through Millennium Park. Drove up to Wrigleyville and checked out the new Gilbert’s billboard. Went up to Lincoln Square for lunch and window shopping. All in all, it was a pretty fun day except for the whole cancer thing.

Test Results and Next Steps:

Finally, back down to Dr. Stein’s for test results and discussion of next steps. My tumor markers were all normal, which is kind of unusual, but I guess not unheard of. It just meant I would need a biopsy of one of the lymph nodes to confirm the type of cancer. PET scan showed activity levels appropriate for cancer. Chemo treatment would be 3 cycles of BEP. There’s a nationwide shortage of bleomycin (the B in BEP), but Dr. Stein had reserved medicine for me the week prior when my CT results came in. My prognosis is good. This shit is curable.

Party:

A whole bunch of friends and family came over for a party. Much merriment was had by all. The guys headed out to the Taste of Glen Ellyn afterwards for some additional drinks and the longest 80’s rock medley of all time. I think I made a joke that it would be nice if I didn’t have to get cancer just to get a guys’ night. I have to be honest, it’s kind of fun to be the guy who gets to make cancer jokes.

We ended up at a local bar after the fest where I bumped into one of my football and baseball coaches from high school. We reminisced for a bit, and I broke the news. He was there with a friend who had lost his young son to pediatric brain cancer, and this news brought back some very painful memories for him. I’m sure those memories are never far away. I can’t even articulate how sorry I am for his family’s loss. If you’d like to read his family’s story and help contribute to beating this awful disease, here’s the link: R33M. Make sure you have some Kleenex handy.

Biopsy and Port Placement:

The next Monday I went in to Interventional Radiology for a biopsy of one of the lymph nodes and placement of a chemo port in my chest. Both were very easy procedures conducted under “twilight” anesthesia. Sadly, this did not involve emo draculas. Anyway, I now have a 2” scar on my chest with a ½” tall lump underneath it. This is where they will inject the chemo so I won’t need a new IV every day.

The anesthesia was pretty weird. I felt completely lucid one minute, and the next thing I knew it was over and I was back to being completely lucid. The nurses put on the Jimmy Buffett Pandora station for me during the procedure, which was cool. I was just chilling under some warm blankies looking up at a couple ladies in scrubs. It felt like a very strange party.

After a couple days with the port, I’m noticing it less and less. It’s still very tender and it’s a bit hard to sleep on my side or lift heavy objects, but hopefully it will just be a part of me soon. I actually feel it in my neck more than my chest, possibly because the tube runs into the vein in my neck and down towards my heart. I guess I’m part cyborg now?

Update 5/25: Biopsy results came back exactly as expected. I said something to the effect of, “that’s good news.” The nurse seemed a little taken aback. I guess I was just worried it was going to be something else that was less treatable. I was having a brutal day at work, and I joked that you know it’s a shitty day when the good news is you have cancer. If there are any major grocery retailers out there reading this, it would really help me get through this if you would take in some Gilbert’s Craft Sausages.

Brain MRI:

This is done to confirm the cancer has not spread to my brain. This is very unlikely as it has not spread to my lungs yet, but again, better safe than sorry. I’m getting this done in about an hour. I got a prescription for Xanax, but F that. It’s just lying still in a tube, right? We’ll see. I have Teddy’s school music recital afterwards, so I don’t want to be all loopy (or do I?).

Update 5/26: Did the MRI yesterday, and definitely no Xanax needed. As suspected, it was just lying in a tube with very loud noises for about 30 minutes. It actually kind of felt like I was inside a giant subwoofer. Strange experience, but I was pretty surprised that people freak out about it so much.

Sperm Banking:

Of all the doctor visits I’ve had lately, this one should theoretically be the most fun (besides the bloodwork that seems to accompany absolutely everything I do lately). Chemo can cause infertility, and there’s a chance I will need to have my lymph nodes removed from my abdomen, which can cause some issue where you can no longer ejaculate. I guess you somehow ejaculate into your bladder. Of course my first thought was of peeing a girl pregnant. I was assured the pH of the bladder would render this impossible. Still worth a chuckle though.

Chemo:

Chemo treatment is supposed to start Tuesday after Memorial Day, but nothing’s finalized yet. I’m not looking forward to it, but I also want to start yesterday. The sooner I start, the sooner it’s over, and the sooner I’m cured. I’m doing my best to focus on a positive outcome, because a) that’s the likeliest scenario, and b) the alternative is simply too emotionally taxing to contemplate. Ain’t nobody got time for that.

Next on the agenda:

Total domination.

Intro to Nuts & Butts

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.