By now you’ve probably realized that I’m an open book about pretty much everything. I mean… why not? But, it wasn’t until a couple of weeks ago that I was able to look back and muster the courage to share this because I’m finally at a point where my health has improved enough for me to believe there’s a good chance I won’t get admitted into the hospital again. If I did, I’m worried you’d visit and wonder if you’d unknowingly be a witness to another episode of this. (I think it’s hilarious now and I totally laugh while I’m writing this, btw… but it wasn’t very funny at first.)
Have you ever had to fart and let one slip in a conference room at work? Or in the car with a passenger you didn’t know very well? If you have (and I’ll bet at some point it’s happened), I feel for you. I don’t blame you. And I understand. We’re human! You and me. Both of us. (I’m reminding you so that in a minute you don’t judge me.)
Until 2014, I’ve truthfully never “sharted” before. Seriously, never. FYI: With no hair ANYWHERE on your body, every time you get a little gassy it sounds like it could be your worst nightmare. With every little toot my eyes go wide in fear - worried that it’s going to be a disaster. Every time, it was a false alarm. Until the day it wasn’t.
Replaying it in my mind, the incident happens in a painfully slow motion: I ABSOLUTELY, COMPLETELY, TOTALLY SHIT MY PANTS IN MY HOSPITAL BED… and not just a little bit either. The worst part? I was on so much medication I didn’t know it. I may have been lying in that body-temperature stew for 10 or 20 minutes and I can’t tell you how mortifying it was to discover what had happened—not on my own—from Mom, my nurse and Justin. I don’t know what tipped them off, either. The smell? A squishy sound coming from the pastic-covered mattress? Either way, there I was. Soaking in my own shit.
As soon as I got up to go to the bathroom (which didn’t muffle sound very well) I had to go poo again. It was wicked. There was an evacuation from my body that was so fast, I had no comprehension it was even possible. I was horrified my body let this happen.
Have I told you about the woman with two kids who worked three jobs who cleaned my room? She was a sweetheart! As she mopped the floor every day, she’d comment on how I was doing compared to the day before and expressed genuineconcern for me. She probably cleaned a hundred rooms every day. But, she was interested in knowing ME. So after the trauma that day, try—for a second—to imagine the guilt I felt when she came in to clean. I almost wish I would have ignored her every day of the previous several weeks. Almost.
I think you’d agree that typically in the social media world we put our best foot forward when it comes to sharing. When someone posts a new Facebook profile pic, the chances are—it’s phenomenal. The best angle. The perfect lighting. Your “skinny” side. You know, the one that makes you look 10lbs lighter. Be honest… you’ve done it. I HAVE done it.
I’m being honest in this post knowing that you might think less of me, but quite frankly it’s important to tell you that, yes, most of the time I write about fun stuff like goofing around in the hospital or important health updates. But this is the true (and very real) part that doesn’t get talked about often. Don’t get me wrong… I DO have fun. The picture I paint of this journey is the one I want to remember (and I’m a positive-thinking person) so I try to put that energy out there in the world. There are soooo many fun stories/photos to share when people visit, so I’m not trying to be fake. It’s just (perhaps) not as sexy as I make it look.
Does Fergie’s G-L-A-M-O-R…OUS come to mind? Not. So. Much. But, I try to make having cancer look good, dammit! It’s just not. And there you have it.
I haven’t written an update for a while because I honestly haven’t felt up to it. Until I had something fun or really positive to say I just kept procrastinating. Emotionally/mentally, I’m going through a lot right now (related and unrelated to cancer) that’s making simple things more difficult to process. Relationship stuff, the implications of my upcoming scan & biopsy, and contemplating the future and what’s in store for me—they all weigh heavily on my mind. Thanks for being patient. Feel free to message me… I have a lot of catching up to do on Facebook and email but I’m making progress now that my physical health is improving. If you take the time to reach out, I’ll reply. I always do.
You may have seen some pictures of me outside my concrete prison lately… it’s been great! A week ago I was allowed to stop wearing my mask everywhere with a few restrictions. So… I started working out, got coffee, enjoyed ice cream with mom, crashed a rooftop pool party and went out to eat! Does it sound like I over-did it? Yep. Sure did. I spent the last two days at the hospital getting $4,700 Neulasta shots to bring my white counts up and had to get two units of blood because my hemoglobin dropped. Whoops! I’ll scale-back and try again soon.
In general, though, I am recovering. It’s slow and there have been complications. There is a photo below of my legs from last week. I’ve been getting charlie-horse cramps in the middle of the night and because my platelets are so low, my legs bruise. The doc said some patients go to the ER for the pain from the drug-induced cramps but I’m a tough SOB and just walk around my tiny little condo (albeit with a little screaming) until the spasm stops. Oh well. I just deal with it because it could be worse—and it ISN’T. Gotta be grateful for the things you can be grateful for!
Lastly, I know I told you that my scan was in early August and the results were supposed to be on Aug 14th. That plan has changed. My scan is next Monday; results with Bachanova Thursday. I’ll go into detail next week… my brain is tired already. :)
Thanks for reading and checking in on me! Talk to you again before I get my results.
Having a little fun with my hair before it all fell out.
I’ve lived here for a little more than a month. It’s hard to believe it’s been this long already but thankfully I was drugged up for half of it so I don’t remember everything. I was told to plan on being here at least two full months (three, worst-case scenario) and this is the earliest ANYONE on my protocol has gone home. Now, you know I’m not competitive or anything, but…
Honestly, I’m a little nervous going home this early. That’s a lie. I’m totally scared. Beginning tomorrow, I won’t have someone monitoring my temp, blood pressure and looking after me with doctors literally 50 feet away. There’s no code blue button to push and the familiarity of everyone checking up on me will be gone. Believe me, I want to go home—it’s just a scary feeling of being on my own. When I was discharged after the first transplant I was back in the hospital two days later for another week or two. We were too trigger-happy. Not only was that a mean trick the universe played on me, but it costs money every time I come back in and I got a crappy room the second time around.
On the bright side, in the last four days I’ve done a complete 180. As of Monday I was a week behind on seeing any progress with my white cell counts. They were completely undetectable. All of a sudden I had 300, then 700, then 1,300 - and today I am at 1,900 (my typical counts are between 8-10,000). This morning my NP and doc were literally shaking their heads saying, “What did you DO?!” I have absolutely no idea but apparently this is very, very good.
HELP WANTED: CHAUFFEUR, BABYSITTER, ERRAND-BOY
When I go home, I am required to have 24/7 care until day 100. Yikes, man. That’s like… serious, but we’ll see how quickly my body recovers and I’ll decide what kind of negotiating I can do with the docs. In the meantime I could use your help watching me, getting groceries (I can’t step foot in a grocery store) and getting rides to the hospital every day.
Since I wasn’t allowed many visitors I haven’t seen most of you for quite a while. I should warn you: I’m white as a ghost, completely bald again and I’ve lost almost 20 pounds… I keep bouncing around in the 130’s. I’m totally fine; I just may look a little different. Oh, and my ass is gone. Like… GONE. Project “David Beckham Replica Toosh” commences soon!
Thanks for everything. I’m looking forward to being able to see you finally!!
You cannot imagine what it’s like to have your hands taped to your knees, legs strapped to a table while you sit for almost 18 minutes listening to the hum of the machine that floods radiation through your entire body. And I don’t ever want you to. I “smiled” in the picture—and I don’t even know why. It wasn’t real. Inside, I was so sad. Tears were running down my face for almost 9 minutes until I remembered something I told you more than a year ago… I’m glad it’s me. If it had to be anyone, I know I can handle it. I sincerely don’t mean to sound like a martyr and I’m not after your sympathy. I just really believe that the Universe; God; the World—it will only give you what you’re capable of handling. I’m staying positive and every day choose to be happy because the alternative just sounds miserable. If you’re having a bad day, try thinking about that simple idea.
This week has been a million times better than last. I’ll get the crappy news out of the way and move on to the funny stuff, cool?
When doctors say, “You gave us quite a scare”, it’s probably bad. What I didn’t tell you when I posted about the ICU is that it was a very scary couple of days leading up to that moment. It was the closest to kicking the bucket I’ve ever been. All of this info comes to me via my mom, Justin and the doctors after-the-fact. I was on so many meds that I (thankfully) don’t remember much.
After shivering NON-STOP for three hours they finally stopped giving me tylenol for my headache because they thought it might be artificially preventing me from getting a fever which needed to peak, then break. Within a few hours, my temp was 103.7, my blood pressure dropped to 77/30 (which is scary low) and they couldn’t put me on any blood pressure meds because I was pumped full of chemo and they needed me to pee before my bladder started bleeding. As the docs and nurses were standing around me, apparently I sat up and said, “WAIT. Just wait a minute…” and my blood pressure started rising—minutes before I was going to be riding next to a crash cart up a floor to the ICU. I hate this place. I want to go HOME.
In much funnier news, I ate some Rice Krispies a few days ago and, unfortunately, threw up shortly after. I must’ve been hungry and chowed down my cereal quickly because I swear you could hear my vom have a little extra snap, crackle, and pop. Just a little bit. But I swear I heard the famous cereal calling card. It was definitely awkward for everyone in the room staring at me holding my bowl.
I’ve been trying extremely hard (from my hospital room) to raise money for the Man of the Year LLS nomination and I’m really close to hitting the goal but I’m not quite there yet. I really appreciate all the help from so many generous people (for your time and donations). I really am the luckiest guy in the world to have such a great support group to lean on. If you want to help donate, click the LLS Fundraiser link at the top of this page. Get some credit card miles and a tax deduction while you’re at it!
The next time I write I can’t WAIT to tell you about my nurses. Oh, the stories I have to tell! Me on drugs. The things they’ve walked in on. “Shit my nurses say.” …my list is long and your abs will hurt from laughing when you’re done reading.
More updates soon. Love you guys. As always, thank you.
Winning Takes Work
Yeah, I worked really hard to get better. I tried as hard as I could. But so did YOU.
Thanks for being patient with me when I lost all memory of what happened (sometimes I couldn’t even remember the previous day). Thank you for taking care of me when I was being difficult. Thank you for holding my imaginary hair back when I had to throw up 1.3 million times. Thanks for the encouragement and for believing in me.
I’m going to be thanking you a lot so get used to it! Please let me.
Suck & Blow (not the game)
Is he blasting off in a spaceship? No. Is he resorting to the cryo-preservation fad from the early 90’s? Aaahhh… nope. Is that what a male fertility collection bank looks like? Also, NO. But I do need to go back soon to find out if I’m still packin’ or if the chemo burned me out. Hope for the latter, because you’ll be safer on the road without my offspring behind the wheel. The apple does not fall far from the tree, right? Speaking of that: yesterday’s x-ray revealed that the pneumonia is almost gone and I’ll probably be able to drive again next week when I can stop taking this crazy drug!
I digress. Sorry.
S&B: If you’re claustrophobic you’re gonna want to go ahead and avoid having a bone marrow transplant because you’ll sit in this chamber a lot. I have to suck and blow into a tube for at least an hour each time. Last time the nurse did not understand my humor. I cannot even EXPLAIN how many times “that’s what she said” would have come out of my mouth… if my lips weren’t sealed around the shaft of the machine. [insert now] Soon, I hope my lungs start playing ball and give me the oxygen my blood needs to function without getting so tired.
Hi, Ho. Hi, Ho!
You know the rest. I’ve been back to work since last Thursday and it Feels. So. Good. I can taste “real life” coming back. It’s as sweet as french silk pie… only someone was nice enough to remove all the calories so I’ll keep on eating. Watch out, world. I’m back! I’ve been instructed to start slow; 4hrs/day for two weeks then slowly ramp up after that. What I can tell you, though, is that I still have an insatiable thirst for learning and lots of ambition but I now have something I didn’t have before: perspective. And I earned it.
While I won’t preach to you about too many things (hold me to it, please) I feel the need to tell you that I have a renewed faith in companies who look out for their employees. I absolutely could not have been better taken care of. Colleagues stepped in to help while I tried to work and manage chemo at the same time… without being asked. People pooled together and we got food deliveries at home. I got to treat some friends to the Lady Gaga concert. I could FEEL them caring. Most importantly, it wasn’t because they had to.
I was once told, “If you’re good to them, they’ll be good to you.” and I believe that. You might hear about stories from other companies that will cause you to shake your head—so I hope I can share a story, this story, that will make you smile. Note: This is the absolute truth; no ass-kissing innuendo. I don’t even think my boss reads this. Note 2: This is a test to see if he does.
Apparently a couple of you like reading the crazy stuff I write on here so I may just keep on doing it. It’s therapeutic actually, and I’d prefer to not pay for therapy sessions in addition to everything else. Did you know that more survivors than patients need counseling?! Neither did I. Makes sense though. When you survive it isn’t instantly over. I still have my goddamn port installed in my chest! They won’t let me take it out for a while because of the extremely high reoccurrence with cases like mine. The universe told me that I’m done though, so don’t worry about it. I listened.
What I can tell you though is that I feel ready to move on. I don’t mean to be insensitive… but cancer and all the associated fear has already taken up too much of my time on Earth. I’ll probably give a few milestone updates and be an advocate for prevention/treatment but it won’t solely be about the C-word. No idea what I’ll write about yet but I’ll be the candid, potty-mouth (and sincere) person I was over the last 18 months. That’s a promise.
I want to leave you with a special message from a friend of mine; a message that I’ve listened to, believed and lived for nearly 30 years. Pay close attention to the words and the message.
I wouldn’t have gotten through the most challenging time in my life if it weren’t for all of your support. Thank you for reading. Thank you for caring. Most of all, thanks for being YOU.
Talk to you soon.
P.S. Twitter bought this blog platform and is shutting it down. The next thing you’ll see from me will be on ericgilseth.com!
wait. Try really, REALLY f*#king hard.
Justin and I got home from our quick celebratory trip to Florida and came through the front door. We walked three steps and sobbed.
I don’t think I actually realized how scared I was until it was over. Scared probably isn’t the right word. Terrified. Yeah, that’s more like it. Somehow I blocked the fear out in my brain—the same way I block it out when Justin wants me to do the dishes or braid his hair. I (and you) have waited so long to hear the words “cancer free” that I’m not sure if it has really set in until now. Only a few knew this, but there was a time when I learned that at the rate the cancer was advancing, if the experimental drug stopped working or if I stopped treatment, I might have only had two months left. We’ve come a long way from there.
We did this together. You and me. The prayers, hospital visits, food deliveries, rides, donations, hugs, cards, puzzles and emails is what made those two words possible. I will never, ever forget that. Thanks for believing.
Here’s the best news: pretty soon I’ll stop monopolizing your facebook news feed and will make room for other really important stuff like Justin Bieber.
Also, I’m trying to respond to emails and facebook messages as quickly as I can. Thanks for being patient with me!
WHEN YOU WISH UPON A STAR
If you follow me on facebook you probably saw that we jumped on a plane the same day we got the results and headed to… Disney World! Why not!? Actually, after hearing the awesome news we told Dr. Bachanova that we were going and she didn’t just give us a disapproving look; I think she was actually pissed. I did wear a mask almost the whole time, making me look like a first-class idiot, but it kept me healthy. I have so many awesome memories from this trip but a few stand out:
- We stood in front of the Magic Kingdom castle. It was the first thing we did. They put on a show with all the characters and did a mashup of Disney songs and they told us that if you believe, dreams really do come true. My eyes welled up and so did Justin’s. It was pretty cool. http://youtu.be/VyRHkAQ2wSM?t=4m2s
- Islands of Adventure was the second park we went to and we loved The Hulk. The guy behind the microphone running the ride overheard us talking and gave me a shout-out over the speaker… everyone cheered. I smiled.
I owe so many of you a huge thank you for helping us celebrate. Plane tickets, hotel, champagne when we arrived, park tickets and a spa day, plus Justin’s parents’ hospitality—incredible gifts. Thanks! I seriously don’t deserve you guys. But I promise I’ll do whatever I can to pay it forward.
DOLLA BILL YA’LL
Monthly medications through September will cost more than a decked-out 3-series BMW lease, but I hope to be going back to work ASAP and with the combo of working again and TeamEric fundraisers—we should be in good shape. What’s more, I got a few hundred back on my tax return because of medical deductions even though I was only able to work half of the year. Loving it. There is still a balance in the TeamEric account and I have an awesome idea of what to do with it. I think you’ll approve. Stay tuned.
NEXT UP: EASY STUFF
My hair is coming back! My driver’s license expired and I waited until I had a little dusting of something on my head. Still no armpit hair and none anywhere else which is fine, I suppose. It does make manscaping easier.
I still have pneumonia. Seriously. It’s getting old and I hoped I’d be over it at this point but that just wasn’t in the cards. The goal is to keep taking this medication and steer clear of the cold/flu for another few weeks to fully recover. On top of that, my lungs aren’t putting enough oxygen into my blood (I believe the last test showed my lungs are working at about 70% of normal) but that wasn’t unexpected after a bone marrow transplant so I’m not too worried. In the scheme of things, both of these seem like stubbing my toe or getting a sliver. It’s nothing.
I’ll stop writing on here soon… but NOT JUST YET. I’m almost finished. Hang on for one more thing. Right now, it’s top-secret.
So many thanks. Love you guys.
I sent this to people at work, but it’s absolutely been my anthem for many many months. I Won’t Give Up: