You know the saying: “If you don’t have anything nice to say, don’t say anything at all.” Well, for the last month and a half I haven’t had anything “nice” to write about, so that’s my excuse. Will you accept that? Seriously, I procrastinated writing something EVERY WEEK because my health kept getting worse and I hate having to share bad news with you. (But still no sign of the Big C! #holla!)
Today, I finally have some happy news to share!
Last week I had the amazing honor of attending the Lifeblood awards held by the Leukemia & Lymphoma society. My little sister and brother even went! (This, folks, is a miracle in itself—the three of us don’t get together as much as we should.)
I know there were many of you who, like me, were a little disappointed when I didn’t “win” the Man of the Year title… because we all worked SO hard (it was measured by whomever raises the most money). But we sort of did win… because all of the candidates together raised over $700,000—the most in MN history—this all goes to help people like me. You helped me do most of the fundraising during a two week window WHILE I LIVED IN THE HOSPITAL! You did that. You made that happen. (People have asked themselves: “Wow, Eric… procrastinate much?” Why, yes. Yes I did.) $65,000 is a lot of money to raise in a short amount of time. We should all be pleased with our effort.
LLS honored me with the Spirit of Hope award because even after discovering I was diagnosed for a second time with cancer late last year, I still wanted to press forward and raise money to find a cure. The Executive Director had some very kind, very humbling words about my effort. I think you’d be proud of me. Make no mistake: this was the very last award they presented at the end of the night. It’s pretty important and I want to share it with you. We did a very good thing.
Some of you know that I have a friend who fought this battle before me and he not only inspires me (and has given me valuable tips along the way!) but has gone extra lengths to reach out to doctors at MD Anderson on my behalf. The second award is for raising more than $50,000 and because we raised so much, I asked that a research grant be dedicated to my friend, Leon Kirby.
I didn’t do this alone. No one ever does. So, thank you for the support and all the help. It was recognized not only by me, but by a whole ton of people who know how hard this path can be.
On the health front, I’m gonna hit this stuff quick because it’s all shitty news. You should be able to scan everything below and get a better idea of what’s going on:
- I’m back living in the hospital. Hopefully only for a week or so. No, this isn’t a joke.
- On Friday I learned that not only is my full-body red skin a sign of Graft-versus-host disease (my new blood is rejecting my skin because it doesn’t recognize it) but it’s also rejecting my GI system which is why I’ve lost 14lbs in two weeks. The worst news is that it’s also rejecting my lungs, they believe. It’s extremely painful. I have a bronc surgery to confirm.
- The crummy news above is due to two reasons: First, we tried to taper me off some of my meds (this is typical when someone starts to feel better), and Second, (because I haven’t told you the really bad news…) I’m starting to lose my graft (the transplant). It’s very rare, but 5 weeks ago they drilled into my hip, sucked out bone marrow and learned that only 87% of my DNA was Leah’s. The other 13% was OLD ERIC. (He was supposed to go away, along with his stubbornness and that sassy attitude!!!) Last week we learned that number had dropped to 80%. So now, my body is waging a civil war that is unexpected and causing trouble.
- I have a “Super Bacteria” infection in my sinus. The “Super” is just like a “Super virus” (read: ebola and the extreme difficulty in which it takes modern medicine to fight it off). I was on the “don’t die” plan for the first week. I survived. It did not. Eric wins again.
- Because of the Super Bacteria, they installed ANOTHER plastic line in my body (my 4th implant) several weeks ago and I’ve been on two different kinds of IV antibiotics to fight it.
- The 4th line was installed by a doctor at Children’s Hospital because it was the fastest place they could get me an appointment. She screwed it up (perhaps because: I. am. not. a. child.) and installed it into the wrong vein so they had to put ANOTHER hole in my body (this time in my right arm) to install a 5th line because…
- The 4th incorrectly installed line caused my body to create a “pretty massive” blood clot (the doctor’s words, not mine, I swear to god) in my artery, 8 inches from my lungs. Yep. Because taking Coumadin blood thinners for three months and stabbing myself 2x a day in the stomach with a needle to inject drugs is what I really wanted for Christmas.
See why I didn’t want to write a blog post? It’s a bunch of shit, is what it is.
I want. My life. BACK!!!! Give it back… RIGHT EFFING NOW.
I’ve been doing this all on my own for the last two months. It’s been very hard. Simple things like having the energy to make a proper meal or wiping steroid lotion on my back are challenges. I’m sure people do it all the time, but it’s seriously hard (emotionally and physically) to be alone while trying to heal. Don’t get me wrong… I love your company! What I’m talking about is having one person who knows anything and everything that’s going on with me and is there for support. I took that for granted. But, as soon as I have more energy I can have you over to “catch up” (hopefully over a glass of wine!).
A month ago I was doing great, talking about going back to work (a sign of normalcy) and today I wouldn’t dream of asking the doc to sign my permission slip. That’s okay though… this is just a bump in the road. The bottom line is: I’m still not going anywhere. There’s a long life ahead of me and there is still time for fun. However, I’m going to stop saying “Bring it on—I can take it!” and “What doesn’t kill you makes you stronger”. It’s time to change my tune: “I’ve done my time. Give me a multi-decade break, will ya?” You’d be doing me a huge favor if you put that energy out into the universe. Thanks for the help.