“Courage Through Cancer”

NATASHA_&_TYLER_WEDDINGWe agreed a long time ago that no news is good news, so I know you’ll forgive me for waiting almost a year to write an update.

All is well – Natasha and I got married in October and we moved into a new home in November; I’m working at an amazing creative agency (Parallax Branding + Interactive) with a bunch of amazing people; and, 26 months after being told those three little words (“you have cancer”), I’m happy to report that I’m 100% cancer-free.

Maintenance therapy continues. I’m still on the same combination of oral and infused chemotherapy (POMP), which means I only have to be in the infusion center once every 28 days. The monthly infusions leave me feeling less than stellar for a few days each month, but thanks to regular neupogen injections I have a semi-functioning immune system and have been fortunate to avoid further complications or infections. Knock on wood…

We were  humbled recently to have the opportunity to share our story in the UT San Diego, as part of a series called Courage Through Cancer.

Check out the article here: Courage through cancer: Infections add to cyclist’s tough battle

Special thank you to Doug Williams and to Clay Treska for giving us the chance to talk about our experience.

Until next time…

Lots of love!
–T

Spring Update II

I’ve been dragging my feet on this update because I don’t like being the bearer of bad news.  Usually when we hit a rough patch I leave the updates to Natasha (or Leigh), but this time I’ll do the dirty work myself.

Brick Wall

Here we go again

Before anyone jumps to any conclusions, let me just say: I’m still cancer free.  And, thank God for that!

However, my chemo is on hold for the time being, as some complications have surfaced that must be addressed.  You may (or may not) remember the pneumonia I battled last year left a small cyst in the right upper lobe of my lung.  After various examinations, a CT scan, and a brochoscopy, we have learned that the cyst has become infected.  At this point, the doctors believe the best course of action is to have it surgically removed.

Natasha and I met with the surgeon last week, who told me “you look better than your chart,” and assured us that he felt confident the procedure would be a success.  Surgery is scheduled for May 8th, with anywhere from 4-6 days in the hospital to recover.

Physically, I feel strong.  I rode my bike this morning and have been able to get back into a regular routine at the gym.  Emotionally, I’m discouraged but not distraught.  There are a lot of reasons to feel good about this.  I am physically strong, I have a functioning immune system, and removing the cyst eliminates a potential source of future complications.  There are a lot of reasons to be thankful.

All that said, this still sucks.

I’m not going to say this is just another bump in the road, or hurdle to clear, because I’m tired of those analogies. This feels like another brick wall to run through. But we’ll do it.  What choice do we have?

I’m always finding inspiration in unexpected places, and earlier this week I was inspired by the Iditarod Trail Sled Dog Race, and the story of one author’s journey to follow the race from the air.  It’s a long read (with some beautiful photos) but highly recommended if you can find the time.  Here’s the link to the full story: Out in the Great Alone

One of my favorite passages comes all the way at the end, when the author comes to a certain realization about the whole race, and why people (and dogs) subject themselves to such extremes:

Who knew what would ever be there tomorrow? And it hit me that that was exactly the point of the Iditarod, why it was so important to Alaska. When everything can vanish, you make a sport out of not vanishing. You submit yourself to the forces that could erase you from the earth, and then you turn up at the end, not erased.

I guess, in a way, we’re all racing our own personal Iditarod, making a sport out of not vanishing.  I like that idea.

Will plan to keep everyone posted as surgery approaches!

Lots of love,
–T

Spring Update

Jack Wagner

Double Trouble (circa 2000)

We’ve been holding on to the premise that no news is good news, so with that in mind, it’s a good thing that this is my first entry of 2013.

Right to it then:

  • Still Cancer Free: I had a Pet Scan last week, and it came back 100% clean and clear. My previous scan (from December) showed some activity at the periphery of the mediastinum (around the edge of my chest), which the radiologist had attributed to the residual effects of radiation.  This activity no longer shows up on the scan, which is Great news.
  • Dose Adjustments: Maintenance chemotherapy hasn’t been without its challenges.  We’ve had to make several adjustments to decrease the dosage of my oral medications (methotrexate and mercaptopurine), and have had to take a week off here and there to give my body a chance to recover.  By nature, chemotherapy is immunosupressive, but it’s a fine line between acceptably decreased cell counts and the dangers of neutropenia.  Thank God (and science) for neupogen, and for antibacterial hand sanitizer (I don’t leave home without it).
  • Lhermitte’s Sign: Just when you think you’ve experienced every strange side-effect under the sun, along comes Lhermitte’s Sign.  Back in/around December, I started noticing strange nerve pain and electrical sensations when I looked down (chin to chest). Initially I ignored it, hoping it would go away, but when it got worse I began doing some research and decided to mention it to my doctor.  He confirmed our suspicions, that this was likely a residual effect of high dose chemo/radiation therapy.  Fortunately, in my case the condition is “self-limited”, meaning that it should resolve itself over time and without treatment.  It’s painful and unpleasant, and exercise makes it worse, which has added some additional excitement to my cycling and running.  I have a new found empathy for people fighting multiple-sclerosis – what a terrible disease.
  • RIP Jack Wagner: When I was 17 years old, I made good on a threat to bring home a dog.  He was wild and energetic.  He was funny.  He was smart.  He was loyal.  He was a biter!  And, for 13 1/2 years, Jack was a member of the family.  A few months ago, he was diagnosed with (believe it or not) lymphoma, and last week we had to say goodbye.  Natasha believes that Jack was sent here to take away my lymphoma.  What a beautiful, romantic, bitter-sweet idea that is.  I hope it’s true.

Battling cancer has made me hyper-aware of just how many people in my life (friends and family) are touched by this disease.  Today my thoughts are with those people in my life (and there really are too many) who have been recently diagnosed; who are in the middle of the fight; who deal with constant tests, scans and fears of recurrence; and to those, like Jack who’s battle is over, and who are in a better place – chasing squirrels in heaven 🙂

–T

Christmas come early: I’m Cancer Free.

Holiday Greetings Everyone,

This update is overdue, but for the most part, it’s safe to assume that no news is good news at this point.  To that point, I’ll get right to it: I’m cancer free.

I had a PET scan last week and, to quote the radiologist’s report, “there was minimal uptake at the periphery of the mediastinum,” but nothing lighting up in a way that would indicate relapse.  Translation: Everything is looking good.  The activity at the periphery of the mediastinum is common in patients that have received radiation therapy (which I have) and is no cause for concern.  I’ll have a full CT Scan in Feb/March, which will mark our next milestone on this journey back to full health.  Until then, I continue on the maintenance chemo regimen–a combination of daily, weekly, and monthly pills along with once-a-month IV infusions.

In November I had my eighth and final (God willing) dose of intrathecal chemotherapy.

In November I had my eighth and final (God willing) dose of intrathecal chemotherapy.

One year ago this week (December 4th, 2011) I was in the ER with back pain and breathing problems.  An X-ray revealed an unidentified mass in my chest, between my heart and lung. Four days later, on December 8th, I was officially diagnosed with stage IV lymphoma/leukemia.  As we approach the one year anniversary of my diagnosis, I’ve been awash in a variety of not-so-pleasant memories.  It’s crazy to think that it was only twelve months ago that this whole chapter of my life began.  Continue reading

Back On The Grind

Infusion Center Shades

Another day at the office

The honeymoon is over.  Back from our California road trip.  Back to reality.

Don’t get me wrong, Tash and I couldn’t be happier, and our trip couldn’t have been better.  I wrote earlier this week in my journal that if our road trip had been the last week of my life, I would’ve died a happy man.

It was as close to absolute perfection as I could imagine.

The sunny beaches and scenic valleys of Santa Barbara; red woods towering above and craggy cliffs plunging below Big Sur; getting lost in the sights and sounds and tastes and smells of The City; the vine covered hills and quiet roads of Sonoma.  I couldn’t have asked for more.  And to be able to do it all with my best friend, and to come home with a fiancee to top it off…icing on the cake. Continue reading

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?

Continue reading

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

Scratching the Itch

Long Chicken

You know you want me.

Just a quick update for everyone:

It’s been a good week.  Since my release from the hospital on Friday, I’ve felt progressively stronger each day.  My latest labs (drawn this morning) are looking good, as I’m within the normal range on the majority of key categories in my blood panel–red and white cell count, platelets, absolute neutrophils, etc.  My liver enzymes are elevated (likely as a result of the most recent round of treatment) but have been steadily trending downward.  I’m confident we’ll be back to normal by my next scheduled blood-draw on Monday. If that is indeed the case, and all of my other numbers continue to look good, I believe that we’ll get rolling on round 2A sometime in the middle of next week.

In the mean time, I’m enjoying some days of feeling good, eating well, and spending time with family.  My parents traded places this week, Mom headed back to Nebraska and Dad here to San Diego.  Murt gets a temporary break from my sass and sarcasm and Daddy Wags steps into the heat of the anti-cancer kitchen.  Leigh spent the week with me last week during the toughest stretch we’ve hit on this journey thus far.  It’s truly a full-time job cooking and caring for me, especially during my rough patches.  I couldn’t do it without my family, who I love beyond words, and to whom I can’t adequately express my gratitude.

One more quick thing that I just have to get off my chest. I mentioned in a recent post that I have been craving some junk food…true confessions time, and I know Leigh is gonna read this, so I’m just busted.  I snuck out on Sunday for an original chicken sandwich from Burger King!  When I was about ten years old (Leigh would’ve been eight) we used to make my Dad drive us through Burger King (or Amigos) after piano lessons.  I’d order a “long chicken sandwich” or chicken soft tacos every time.  For those wondering it was just as good as I remember.  No regrets!

Final note on the nutrition side.  It’s normal to lose weight during chemotherapy.  Treatment speeds up metabolism, which in my case is already pretty high to begin with.  During times when food tastes good, like this week, I’ve been working hard to take in a lot of healthy (minus my BK breakdown!) high quality calories.  I’m happy to share that I gained five pounds between Monday to today!  I’m working towards a goal of gaining at least five more pounds before my next weigh-in on Monday.  Gain ten pounds this week.  How’s that for a new year’s resolution?  Anyone working to move their weight in the opposite direction can feel free to live vicariously through me.

And, fair warning, I still haven’t satisfied my California Burrito craving, so if it comes down to Sunday night and I’m still short a few calories, it’s going down!

–T