Treatment Update: Day 86

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Hello, quick update (real reason being I wanted to count how many days it has been), 2B is definitely having a battle in Ty’s body. Although you would never know it by looking at him. He is doing a fantastic job at toughing this one out, because what it says on paper and what I see in front of me are two different things.
What it says on paper is that Ty is super low in all his counts. Hence, the multiple infusions he’s had to have the last several days to ‘rejuice’ his innards. This round definitely has a way of knocking him and keeping him low.
What you can physically see is Tyler fighting strong. Whatever the battle is inside, he is winning. He’s kept the cusp of a fever at bay, and has somehow managed to silence all major side effects with sheer will alone. If I didn’t see his lab reports, I’d never know how weakened he is right now.
Fingers crossed the fevers/infections stay away while Ty rebuilds from here on out. He has spent a lot of the week at the infusion center refueling. Murt Marlene even made a magic bone marrow broth to cure his anemia. But in Tyler’s words, “if I didn’t have to go in to get a blood transfusion, I’d be riding my bike”.

20120307-230953.jpg Each chemo round shows on Ty’s nails like the rings in a tree trunk.

Brotherly Love

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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

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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

Shifting Gears

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I had a beautiful day today. It feels like a dream, now that I am looking back at it. Technicolor if you will, thanks to the occasional showers that have made San Diego’s hillsides vivid with green. In the unbelievable array of episodes that have flavored my life for that last few years, it is a wonder that I can tell what is real in all of this surreal.
I know today was so real, and so unbelievable, that I cannot stop smiling. I have the most wonderful secret, and I cannot stop smiling because I am about to tell the world…
I finally learned how to properly shift the gears on my bike.

It was Tyler’s idea to ride today. ‘Long weekend, you can get two riding days out of it at least’. Ughh. I was only mentally prepared for one. I thought it over..Wait, ride with Ty? We can actually go on a ride together? He is feeling good enough to want to ride with me? This sounded too good to be true. Before I knew it, we were on the road, 60 degrees, partly sunny skies, who could ask for anything more?

I told Tyler I was having some difficulty climbing up hills and I’d like to get much faster. He asked me how my shifting was. ‘Fine, I shift when I need to’. Tyler never believes me, at least never my first answer, or he reads between the lines. I love this about him. He rode in front and instructed me via hand signals, ‘Anticipate the hill, and when I give you the sign, shift in that way.’ Easy enough. I followed his hand signals, ‘Ty, this is way too easy, you’re making the pedaling too easy, I feel like amateur hour back here’. I followed him anyways. Tyler is a fast hill climber, I figured there be something valuable in this lesson.

We rode. And rode. And rode. Lots of hills. Small hills. Steep hills. Long hills. Hills that seemed to ride straight to the sky. Beautiful, stunning, secret roads with hills, lush green landscapes of hills, twisty turning hills. You name it, we rode it and it felt good. Really good in fact. Smooth, effortless, and tauntingly challenging, how I deep down always knew riding should feel. He continued with the hand signals. If I missed his signals, my legs would burn instantly. By the end of the ride, I got the hang of it. Tyler just made something really hard for me, a lot less hard. “Anticipate the change, prepare when you can, don’t be afraid to take it easy’.

I was taking ‘the climbs’ too hard. I saw something tough in front of me, and instead of backing off, and letting things ease up, I switched to my hardest gear. I felt like I was doing my best, or attacking the problem, if I was going full steam ahead. So what happens? Burn out. I’d lose steam before the peak, by this time it can be too late to shift down. It leaves a lot less in the tank for the next hill to tackle. Too much pride. Who cares who sees what gear you are pedaling in? Life’s about to throw more hills in your path than you will know what to do with; anticipate the change, prepare when you can, don’t be afraid to take it easy.

So there is our secret. The lesson behind our beautiful day. I hope it translates.

Tyler is doing beyond amazingly. The prayers are working, and I am so grateful for each and every one of your well wishes. He is soaking them up and dominating this portion of treatment.

//tash

Get Well, FAST!

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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

Treatment Update: Day 50

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An anecdote:
   I started training on my bike yesterday for a charity ride I want to do in April. Tyler is my coach/trainer/voice of reason. It was a bit difficult for me to make the decision to train without Ty, my only known riding partner. He convinced me I could do it and he would help me- from home, hospital bed, couch, cancer center, wherever he may be.
  Imagine my surprise when I arrive at Tyler’s place to have lunch with him after my ride, to find him doing crunches on his floor in full spandex… I thought he was going to do a little light workout around his block. You don’t need spandex for that.
  Tyler rode his road bike yesterday (and today), down and back one of San Diego’s most infamous hills… probably longer and harder than I even rode. He shocked my socks off.

Point of story. Don’t underestimate Tyler.
He is in serious Warrior mode. In other words, he’s being Tyler.

And now…
Ty will be admited to the hospital for round 2A tomorrow. He has gained 10 lbs in the last week, 5 lbs in the last 3 days! Liver enzymes are near normal, so its full steam ahead. In the words of Ty’s main nurse Ursula – ‘He is looking real handsome’ 😉 and he is, cheeks full of color, sass in his voice, he is ready for action!

Scratching the Itch

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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

Treatment Update: Day 41

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Just a quick update tonight –
Ty was released from the hospital today, as his fever has subsided and his stomach is showing signs of repair. He will have a few days to finally get a good night’s sleep and recover a bit before he will be re-admitted next week to begin his 2A cycle of chemo. He is doing awesome, just really really tired and a sensitive tummy.

❤
Tash

On The Upswing

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Bald Tyler

Freshly showered and shaved

It’s been a long week.  Actually, It’s been a long couple weeks to say the least, but the last few days have been particularly difficult ones.  In the interest of getting everyone up to speed, here’s a quick update on the last two weeks or so:

  • Saturday, January 7th: Discharged from hospital following 7-day stay for administration of “1-B” treatment
  • January 8th-9th: Cell counts begin to fall (as expected) following chemotherapy. Extreme loss of energy and appetite.  Eating is an exercise, and my body refuses to let me keep anything inside.  Hydration is a constant battle.  Sleeping is pretty much all I can do.
  • January 10th: Check into the ER after taking an at-home temperature of 102 degrees; Admitted to hospital, and immediately begin broad-spectrum anti-biotics, blood work, and a variety of cultures seeking to identify source/cause of potential infection.
  • January 10th-14th: Persistent high fevers (102-103) and diarrhea continue; no success in keeping food or liquids in my body long enough to be absorbed.  I’m on IV, so hydration and electrolyte replacement is ongoing.  Blood and stool cultures continue to come back negative for any specific bacterial infection.  CT scan ordered for chest (checking for potential infections like pneumonia); abdomen (checking stomach, organs, intestines, etc.); and pelvic region (colon);
  • January 15th: Results of CT scan reveal “Neutropenic Colitis”; severe inflammation in intestinal walls as a result of chemotherapy, and worsened by the lack of any immune response to help fight off the inflammation.  At my lowest point (known as “nader”) my white cells were basically undetectable in my blood. This was the case for about 4 days.  Over the course of those 4-5 days, I received several transfusions of platelets (short-lived red cells) which were struggling to survive my high fevers, along with one transfusion of blood to address low levels of hemoglobin.
  • January 15th-17th: In an effort to rest and heal my gastro-intestinal tract, they decide to start feeding me via IV and order me on ice-chips only.  Fortunately, as all of my cultures had continued to come back negative for infections, they allow me the luxury of immodium, which provides significant relief.  Broad spectrum anti-biotics continue, along with various anti-viral and anti-fungal medications to address potential underlying infection, and ward off possible outside infection.

I’m happy to share today that things are turning for the better!

Over the last several days, my body has once again began to produce white-cells, which will assist in the healing of my intestinal tract along with fighting off any general threats. My white count has been trending upward for several days, and was at 5.6 (within the normal range) this morning.  Other important numbers to watch are my hemoglobin and platelets (which are both trending upward but below normal range); and the big one, absolute neutrophil count, which was 250 this morning and trending upward.

Dumb and Dumber toilet

Kind of like this, but for 8-10 days.

I’ve been fever-free for going on 48 hours, and they’ve given me clearance to drink/eat clear liquids (water, broth, jello, etc.) to see if my body is ready to return to normal food in the next few days.  I haven’t had any internal bleeding, and the immodium has made for fewer trips to the bathroom, which is great because my life was starting to feel like watching the bathroom scene from Dumb and Dumber on repeat.

I’m hoping I tolerate the broth and jello well, and I’m able to transition to whatever comes next.  Shakes and smoothies?  Cheeseburgers?  It’s funny, I’m not as hungry as I thought I would be while being fed though a tube, but I still crave food, and it’s mostly junk I’m craving.  Burgers, burritos, burger king chicken sandwiches, it all sounds good.

Hopefully next time I write will be from the comfort of home once again!

Love you all.
–T

Day 36 Update

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Tyler is still hanging tough in room 366 of the Thorton Hospital at UCSD. Kristin, the current nurse, summed it up best saying, “You’re the mystery man right now.” The medical team can’t exactly figure out where the infection is coming from, and we’re still waiting for some blood results to return. Tyler continues with spiking fevers, unidentified infection(s), and an upset gut.

In order to calm down his digestive tract, they put him on nutrition administered into his veins. The IV nutrition will allow his digestive tract to settle down, and eventually we will slowly and steadily introduce normal foods. He’s been on the IV nutrition for about 32 hours now, and we’re hoping that it will calm down soon.

Since he did have another fever, they did a CT scan to determine any other potential causes for infection or see anything significant that may have changed.

The doctor rounded yesterday, and we were able to bring to light some of his nutritional deficiencies and imbalances: low vitamin D, low vitamin A (retinol), and high copper (which, in my clinic, we often see in people fighting cancer). The doctor was open to supplementation, as we emphasized that this is a critical period for Tyler to swing his internal environment to inhibit cancer progression. I have a food/nutrition post coming here in the next few days… so I can expand on that later.

Ty remains strong and determined. Thanks for all the love and support.