Ty has been released from the hospital. He is no longer neutropenic, his fevers have stopped for the last few days, and he is left with pneumonia to fight. His antibiotic load is still quite intense and he will have a home nurse to help administer and be hooked up to an IV pump. Jim, aka Dad, aka Gentleman Jim will arrive tonight so Ty will have an additional nurse. Next round of chemo will probably be delayed a few weeks while he recovers from the pneumonia. The pneumonia is still quite painful, as Tyler has just recently acquired an immature immune system and he also has a pre-existing asthma. He will have to take it nice and easy, and really focus on nutrition, exercise, and healing the lungs. 🙂
In true Team Tyler spirit, we have an unpredictable turn of events. Tyler is still at Thornton Hospital as an inpatient being treated with neutropenic pneumonia. His white blood cell count has been slowly creeping up and his fevers lessening. However, in a very strange twist, Tyler is yellow!
For the last 3 days, Ty has been very sleepy. Much like someone with narcolepsy, he would fall asleep while sitting up in a chair and immediately act like he was in a deep dream. He also stated that he felt like he was having conversations with people, who were not there when he would wake up. Two days ago we noticed the whites of his eyes were getting a yellow tinge. We figured it was the increase in medications and thought nothing of it. He had the bronchoscopy yesterday and underwent sedation, and today, he is still groggy and acting ‘funny’, think of the YouTube, ‘David After the Dentist’. His skin is also extremely yellow. As the self-proclaimed ‘BananaMan’, we were starting to wonder what was going on. As a neutropenic patient in a fragile state, we were also getting very concerned.
Today Tyler’s blood tests revealed very elevated levels of bilirubin – a pigment that comes from the breakdown of red blood cells. Bilirubin gets processed in the liver, and an excess means the liver is having issues and cannot metabolize the bilirubin, therefore there is an excess of bilirubin accumulating in the blood. In other words, liver function is now in question.
As of today, Ty’s liver does not show abnormalities under ultrasound, so no stones or visible defects. We were informed that one of the preventative anti-fungal medications Tyler was on is processed through the liver and has the potential to be liver damaging.
This medication was recently doubled in dosage…
The side effects of this medication are: hallucinations, drowsiness, jaundice…
Tyler was immediately removed from this anti-fungal today. He is seriously BananaMan yellow, and his demeanor is still ‘funny’. We are all hoping they found the culprit in the anti-fungal medication, but we will have to wait and see. One day at a time.
Thank you for your continued thoughts and well-wishes.
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…
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.
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???
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’:
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”.
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
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!
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).
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,