About Ty_Wags

Strong, determined, and united by a common cause, we are Team Tyler!

Radiation Day One

Radiation Mask

Torture device for the claustrophobic.

Radiation started at 6:30am. When I arrive the mask is waiting for me. A few weeks ago they created a plastic cast of my head, shoulders, and upper chest. Laying on my back, the hardened mesh is laid in place and fastened to the table, locking me into place. No moving. No talking. I can’t open my mouth.

“Thumbs up if you’re ok.”

Through mesh and barely open eyelids a grid of green lasers appears, aligning equipment to cast to body to tumor. Science fiction meets real life.

I’m alone. The technicians have retreated to the room next door. A few short x-ray sounds, as machinery hovers above and around me. A tech returns, making mechanical adjustments, then disappears. Longer x-ray sounds now, first on my left, above me, on my right. Am I breathing too hard? Is it hitting the right spot?

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The Dog Days of Summer

Hi all,

I hope this update finds everyone happy and healthy.  I’m doing well and just barely resisting the urge rip the PICC line out of my arm.  I had a chest X-ray on Monday, and am waiting to hear back from my doctor once she’s had a chance to review the results.  Hopefully it shows continued progress, and that the pneumonia is almost completely resolved.  More on that later, but first, a quick story that I just had to share…

I have been out on my bike for some easy spins in the last week or so, because I’m feeling good, and I’m so stir-crazy I can barely stand it.  Anyway, I’ve been riding Fiesta Island since it’s so flat and there is typically little traffic.  I headed out on Saturday for an easy spin, and completely forgot about Over the Line.  For those unfamiliar with this annual booze/boob fest, but it’s a San Diego tradition.  Check out this Youtube video and you’ll get the picture (it’s mostly safe for work).  Needless to say, it was absolutely packed, with cars parked around the entire circumference of the island.  Knowing it was a bad day to be riding there, I decided to do one lap and head home.

Imagine this coming at you full speed.

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An Overdue Update

This post is late in coming.  I’m starting to feel like a broken record.  I’m back in the hospital, battling this pneumonia.  I sprung a fever late Monday afternoon and ended up back here for the too-many-ith time in the past few months.

The doctors expect that the fevers were likely a reaction to one of the antibiotics I had been taking.  When they discontinued the medication, the fevers went away.  Unfortunately, that means we have to cross one more antibiotic off the list of possible medications we can use.  Our list of effective drugs is shrinking, but we’ve still got a few good options on the table.  We’ve switched to a new antibiotic (one to which the pneumonia is still sensitive) and we are hoping that I won’t have a similar bad reaction this time.

The good news is that my symptoms are improving.  I’m feeling stronger (weight holding steady), walking longer (one hour plus for the past 3 days) and my most recent x-rays and CT scan show significant improvement.  I feel like if we can continue this antibiotic combination for a few more weeks, we will be a long way towards finally ridding my body of this bug.  So we’re thinking positive and praying that nothing weird (fevers, rashes, dropping white-cell counts, etc.) happens in the next few days. If all goes well, I’ll be heading home on Monday.

Lots of love,
–T

Home Again

I hope everyone is having a nice weekend.  Just wanted to give a quick update and let you all know that I’m out of the hospital and back home.

It’s been a tough couple of months, and to be honest, I’m getting really tired of this.  I want my life back.  I want my body back.  I want this to be over…and yet, as rough as this has been, I realize how much worse it could be, and how fortunate I am in so many regards.  It’s a very strange place that I’m in mentally and emotionally.  I’m just trying to focus on whats in front of me and try not to get ahead of myself.

They sent me home with a LOT of IV medication.  I’m on four different antibiotics, each with a different schedule and a slightly different method for infusion.  It’s a lot to manage, and will basically be my full-time job for the next month while we make sure that the bacteria in my lungs is dead and gone.  As for chemo, according to my doctor, I’ve seen my last round of Hyper C-VAD.  It’s an intense regimen, and after six rounds, my body has had enough.  I will have more chemo, but the drugs and dosage is still TBD.  For now, the focus is on beating the pneumonia–which we will.

Thanks as always for your love and support.  It helps more than you know.
–T

 

Quick Update

Just wanted to keep everyone up to speed.
I’m still battling persistent, recurring fevers, which tells us that the infection hasn’t cleared yet. My breathing has been easier the past few days, and I’ve lost a lot of the fluid that I was retaining in my feet and ankles. We could really use some white cells to help fight, but unfortunately we haven’t seen any significant movement there yet–it can be a slow process.

Thanks for your continued love and support,
–T

The Waiting Game

Greetings to the whole Team Tyler Family,

Why beat around the bush? I’m just gonna come out and say it: I am feeling noticeably better today. My breathing has become easier, chest tightness seems to have decreased, and I’m actually coughing some of this nasty stuff out of my body! I’ve still got some pain around my right ribcage, and an acute pain on my side at the base of my ribs when I cough. My headaches seem to have calmed a bit, so that’s encouraging.

Okley showing his support for Team Tyler. Asked for comment he said "We're starting a four-legged revolution for Tyler." With dogs already joining the movement in Colorado, Nebraska, and New York, he just might be right.

My White Cell Count has improved from an undetectable level of <;0.1 to 0.1. Although it may not seem like much, this is great news. It means my body is slowly beginning to produce infection fighting cells.

So basically we're playing the waiting game–waiting for the combination of antibiotics, anti-virals and my own (weakened but recovering) immune system to knock these bugs out of my body.

Next goal is to stop the fever. While my "fever curves" have been improving my body temperature still hasn't normalized–again, something which we would expect to see as my white count grows. The "bad news" if any, is that I'm battling three significant bugs at the same time, and it's just probably not going to be something that turns around completely overnight. Patience, then, is the lesson of they day, I suppose.

Leigh arrives this afternoon for a long weekend, so I'm excited to see her. Will keep you updated as the healing continues! Thank you for your ongoing thoughts and prayers–they give me and my family so much strength.

Lots of love,
–T

Brotherly Love

Me and Hisoy posing with the banner, which was signed and delivered by my all boys from Sig Ep, Mo Alpha.

Greetings to the whole Team Tyler crew!  I’m happy to share that I’m writing from the comfort of my own couch, and that round 2B is officially in the books.

So far so good.  Liver enzymes are a bit elevated, which is to be expected, but they’re not at a level to be overly concerned.  We’ll watch them closely, along with my blood count over the next few weeks. I’m feeling really good, and am happy to be home.  Nothing like sleeping in your own bed.

A couple of weeks ago a strangely-shaped package arrived at my doorstep.  I opened it and unrolled a six-foot banner, covered from top to bottom in signatures and well wishes from some of the most generous, caring, kind-hearted friends a guy could ever ask for–the men of Sigma Phi Epsilon.

Included in the package was a letter from my good friend Brian Donnelly (aka Donlee, aka Don Mega, aka Count Donnelly):

Shortly after digesting the news of your ailment, Brock, Tim and I started brainstorming on how we could put together an event in your honor so folks back here could show their support.  The event was held late last month (Jan. 28th) at a local bar (in St. Charles, MO) and the enclosed $3,700 check represents the proceeds from that wonderful day. Continue reading

Go Time, Again

Ding ding!

Twenty-one days.  That’s the magic number.  The ideal amount of time between rounds of treatment. Today is day 20.  Tomorrow we start round 2B.

Physically, I’m as strong as I’ve been since this whole process began back in December.  The past 20 days have been so good that, honestly, it makes me nervous.  I’ve been able to ride my bike nearly every day, and on days when I don’t ride, I run, or walk.  My cheeks are full.  My appetite is good.  My labs are good.  Is this how it’s supposed to be?

I was hesitant to ask my doctor, “Should feeling good be a cause for concern?”

He reassured me: Pain and suffering is possible, even probable; but it’s not a prerequisite for effective cancer treatment.  Thank God for that!

I feel like a boxer in the middle of a fight.  The last thing I want to do is to get complacent, start feeling good about myself, drop my guard, and get knocked out.  Yes, this round has gone well, but tomorrow the scoring starts over. And tomorrow is 2B.  And 1B pretty much kicked my ass….so I need all the strength I can muster.

It’s hard to anticipate how things will go.  The doctors told me that reactions to chemotherapy are hard to predict.  They could administer the same drugs at the same dosage four different times, and my body might respond differently each time.  So, I’m cautiously optimistic; enjoying the present moment while preparing for whatever comes next.  Confident and scared, all at the same time.

Your positive comments, prayers, and support have been a source of strength and inspiration for me.  Here’s hoping we can carry this positive momentum through the next round.  Thanks for being in my corner!

–T

Get Well, FAST!

Jake's Racecar

Hoping for a speedy recovery

Greetings from the kitchen table, stocked with steel-cut oats, fresh fruit, a splash of coffee, and my ever-present companion, Jar of Peanut Butter.

Round 2A is in the rear view mirror (pause for applause)!

A quick update for everyone: I was hospitalized from Feb. 1st through 5th for what was our third round of inpatient chemo treatment, or the second round of the “A” cycle of my Hyper CVAD regimen.  Everything went as smoothly as we could have hoped and I made it home in time to catch the Superbowl from the comfort of my own couch.  God Bless America.  Monitoring my cell counts will be especially important over the next few days, but so far, so good.  No fevers, and no Dumb and Dumber re-enactments (knock on wood).

Get better fast

Words of encouragement from my friend Jake. Thanks buddy!

I was feeling well enough to jump on my bike for a quick ride on Sunday before the game, but have noticed a drop in energy over the past 24 hours.  I probably won’t get back out on the road again until my counts return to normal, but it’s gray outside and the rain is coming, so movies on the couch sounds alright for now.

My buddy Jake Harris, has been keeping me motivated with his original artwork throughout this process, so I thought I would share.  Solid advice from Jake, I’d say.

If all goes to plan, I’ll be back at it for round 2B on or around Feb. 22nd–but that’s getting ahead of ourselves.  Speedy recovery, one day at a time.

Lots of love,
–T