Category Archives: Updates from Tash

Treatment Update: Day 141

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Angels in the outfield?
Although Tyler has made huge strides in how he is feeling, I will be the first to admit that the last few days haven’t been any less scary than the few before them. In fact, things got pretty heavy when we realized that Ty has been over a week with fever and no resignation of the bacteria infesting his body.
I will spare the Team of the dramatic details, long story short…
We found out tonight that Tyler’s infection/cause of pneumonia is resistant to the specific antibiotic he was receiving. The pneumonia has now spread into both lungs and the bacteria is prevalent in the blood. Bad news.

Good news: thanks to a new crew of specialists on Team Tyler we have a quick change in antibiotics, much stronger and more targeted to the strain specific to Ty’s illness. They are confident that this is what he needs to make a full recovery. He will also undergo a bronchoscopy to make sure they are not missing additional invaders.
Good news: Tyler is otherwise kicking hard, we’ve got a slight bump in white cell count and a day spent with minimal fever. He’s discovered a new respect for ‘rest’, and how important sleep is to rebuild his systems.
Thank you for your prayers and well wishes, I think we got some extra help this week…

Treatment Update: Day 135

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Tyler post CT chest scan (just got back from the moon)

Tyler had a chest CT last night, which unfortunately shows that the pneumonia is much worse than the doctors thought from xrays. He will have a bronchoscopy in the next hour to test the actual lung area. Ty also just had a minor surgery to remove the portacath (the little alien-looking thing under his skin) from his chest in case that is a source of infection. So far, they have detected a bacteria in his blood and a viral infection. He is on antibiotic and antiviral IV meds and is still waiting on some more virus results. He is still in ‘quarantine’, confined to his room, until a few more blood-tests come back.  There are so many immuno-supressed patients on the floor that they want to make sure Ty doesn’t spread infection that he doesn’t even know he has. Everyone–Doctors, nurses, Murt, and me must wear full protective gear when entering.

Treatment Update: Day 134

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Hello Team Tyler.
Ty is now out of ICU and moved to the cancer ward to continue recovery. Fevers still coming and going, pneumonia still alive and kicking. Good news is blood pressure and oxygen are stabilized enough to get him out of ICU. He looks much better and got out to walk a lap around the ward last night.
Thanks for all your thoughts and prayers.
Ty has one question for the Team: Why is no one laughing at the Shit Song???

Treatment Update: Day 132

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Ty burning up in the ICU

Quick update on Tyler’s progress with round 3B. Once again, the B cycle has proved to work its bite with a somewhat surprise attack. A week ago today, Tyler was released from the hospital after his 3B delivery and spend the week in top form. He was feeling strong and healthy, and we thought this B round may prove to be a little less vicious. As a HUGE surprise, early Saturday morning Tyler got hit with rigors and a fever that landed him in the ER. Within a few hours, infection fluid accumulated in his lungs and he developed severe pneumonia. His blood oxygen and blood pressure have both been low, and he remains in intensive care. Fevers are coming and going and he seems to be in some pain. He is currently on broad spectrum antibiotics, but as blood results come back in the next few days these will become more specific. Doctors said after a ‘dicey’ evening, he took a turn for the better this morning, and are hoping to see positive trends in recovery. He has already received blood and platelet transfusions and will probably need more in the next few days. Ty is in pretty good spirits and in full fight mode.

A personal note:
I had my 100 mi charity bike ride yesterday, the one Tyler has been coaching me for. I didn’t know Tyler was in the hospital until I reached the finish line and saw two missing faces from the crowd. I knew something was wrong, but held back the tears so I could say thank you to my friends and family that were waiting. He had texted me along the entire route, cheering me on and ‘coaching’ the entire way. Little did I know he was in the emergency room and ICU the entire time. Couldn’t have done it without him, and he didn’t want to tell me his status to make sure I finished the ride. Not only did I finish, but I kicked the 100 miles’ butt, thanks in huge part to Ty and his contagious competitive spirit.

Tyler would like to say hello to everyone, and include a link to his ‘anthem on days he feels like shit’:

Hats

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I’m about 85% into a book Tyler has lent me, Lance Armstrong’s War, not quite the war you might guess. It is a detailed account of Lance’s 2004 Tour de France journey. A war after beating cancer, after winning five other Tours. This is a detailed account of a struggle, that never quite seems to be a struggle for the hero of the story. A hero with superhuman strength and an uncanny ability to conceal his suffering. Although, if you read a little deeper, this is an epic struggle for that reason. One man’s battle, of which steepness can be measured by how effortless his triumph appears.

The climax of the story is not in the beginning, nor the end. The assembling of the ‘super team’, the winning of the Yellow Jersey; neither holds any weight to the middle of this saga: the struggle of the long road.

You see, there’s a competitive edge to the start of the race. Exhilaration from the task ahead, mental toughness setting roots, adrenaline from the new event. There’s competitive edge at the end of a race, the light at the end of a tunnel starts to shine. 5k away and you can here the crowd cheering, bells ringing, beer gardens pouring.

So how do you get through the middle?
Ask Lance. Or, ask Tyler.
Ladies and gentlemen, this part sucks. Coasting. Where you cannot see the start or the finish very clearly. When all you can use as fuel is the deepest, strongest will to triumph. This is the part of the race that separates the contenders from the pack, and this part of the race is hard, mentally and physically hard.

In the book, one of Lance’s greatest skills was his ability to hide his struggle. Stone faced and focused at all times, his race was won during each stage, not just the final finish line.

Tyler has been struggling to update this blog in the last week or so…
He is winning stages, but this one is difficult, and to this enemy- he is, and appears, strong. With superhuman strength he shocks me everyday with his urge and desire to stay as fit as possible. With his competitive drive he never lets on of his sufferings. He is a man who puts on a hat and you’d never know there was a single flaw in his body. This is a true hero.

Tyler has just finished round 3A and is now recovering at home.

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.

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

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!

Treatment Update: Day 32

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Hello Team,

This post comes from UCSD ER, where Tyler is being admitted back into the hospital for neutropenic fever, so far hitting 103 degrees. Basically, his immune system is at zero, and something, we don’t know what yet, has triggered an infection in his body. He has just submitted all his labs and will have full cultures done in the next few days. Until the results come back, he will be treated for general infection via IV antibiotics. If the lab results indicate a localized or specific infection, antibiotics will be adjusted to target. In the meantime, he will have to have a stay-cation in the cancer ward for the next few days until his white cell counts boost his immune system and the fever clears. Kind of stinks, but it is necessary, and good that we know how his body is tolerating the chemo, so that dosages and cell support can be adjusted in the future. Plus, we were warned that this may be inevitable, with no immune system, this was a potential outcome.

Some better news is that Tyler’s liver enzyme levels are trending towards normal. Over the last week he has been experiencing abnormally high levels that were limiting the amount of medication and types of food and supplements his liver could safely process.

Some extra good news is that Leigh is here this week, so Tyler will have extra Team members in the cancer ward with him. Plus, he will get all the good nutrition to help him fight the best fight possible.

Please continue sending your healing thoughts, prayers, vibes, energy. The last few days have been really hard on Tyler’s body. He has literally been drained of his bad (and good) cells, and it is painful and tiring. We are trying to remember to think of the chemo as our ‘friend’, but it is hard when it is creating a violent fight against the cancer inside of him. A heck of a bloody war, but revolutions are not always pretty. Keep fighting Chemo, Tyler is using all his might to keep the battle grounds intact.