Good Legs

Ladies and Gentleman,

A quick update on Tyler’s status. I have great news and bad news. Great news is, Tyler beat the heck out of me on our bike ride this morning. Bad news is, Tyler beat the heck out of me on our bike ride this morning. Yes, I know what you’re thinking, I openly admit I was hoping Ty’s treatments would give me the edge. Not so much. Ladies and gentleman the speed racer is back in business!
Radiation has one more week left. So far, slight fatigue and a tiny bit of skin redness. Nothing a little afternoon nap doesn’t take care of.

Happy labor day weekend everyone! Stay safe and happy
❤ Natasha

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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Team Tyler – 4 legs are better than 2

Team Tyler lost a very special 4-legged friend last night. Sir Winston Churchill, my Aunt Monica and Brad’s giant bulldog passed, a very dedicated member of Team Tyler as you will see below. I would like to dedicate this post to our faithful friends that always support us, and love us unconditionally. I hope there are giant bones in doggie heaven, Winston.

Let Freedom Ring (in Tyler’s ears)

Happy Summer Team Tyler. A little update on the state of this union.

  • Ty has been out of the hospital and walking the walk of healing every day. His latest CT scan has shown significant improvements in the pneumonia. The cavitation has shrunk to about half its original size and the active infection is showing only in small amounts. The doctors estimate that 4 more weeks on double duty antibiotics should do the trick…speaking of antibiotics…
  • The most recent IV antibiotic that Tyler has been carrying around 24/7 in a ‘Freedom Pump’ man-satchel has just shown signs of an adverse immune reaction (just like the last one he was on). It causes an immune response that suppresses bone marrow production, which then causes white blood cells to drop – potentially leading to fevers and a debilitated immune system (the cause of Ty’s last hospital stay). Not what you want when you are fighting an infection. Good thing Ty was on top of his cell counts and caught this reaction before he ended up in the hospital again.
  • Ty is still suffering from tinnitus from a reaction to 1 or more of the antibiotics he has been on. This side effect had the potential to cause permanent hearing loss, but docs think it was caught in time and should heal eventually.
  • A new IV antibiotic will start tomorrow, this one should not cause bone marrow suppression but is not ideal because it didn’t do as well in in-vitro sensitivity. Hopefully there isn’t much infection left and it will do the trick!
  • The GREAT news is that Tyler has been getting back to a pretty normal life routine. He can go on long hikes, gained 11 pounds, has lots of hair, itching to get back on the bike, enjoyed a great time with cousins from Sac-town, about to enjoy a great time with college buddies. Plus, its Tour de France time. Besides the major medical issues – can’t complain too much!
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4th of July (not in the hospital- yesss!)

 

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

 

Team in Training

         For as much as we are Team Tyler, I have started to realize in the last several weeks how we are part of a much larger team. As we meet and chat with fellow patients and families in the Blood and Marrow Transplant ward, it becomes evident that our stories often intersect, and we are all rooted in the same fight. I have learned that what we do know, we share, and it is often tremendous help in our personal battles. I have also learned, that as a unified Team against cancer, we really do not know that much. Even small strides in cancer therapy research are giant improvements in our understanding of this disease and treatment. That being said, several people have asked how they can help with Team Tyler, such as donations for our bracelets.  I would like to extend an opportunity for us to help with a bigger picture, the war on cancer.

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Treatment Update: Day 168

Results are in from the Bronchoscopy of last Thursday. Besides the pseudomonas bacteria that we already knew about, there is nothing else showing up from Tyler’s lungs.

Although the test results are good news, Ty is still in a rough spot. He said this is harder than he could have ever imagined. The pneumonia has left cavities in his lungs and he is so congested that he can barely sit up out of bed. He is on oxygen, either with a nasal canula or an over the mouth mask. Walking five feet to the bathroom is a big challenge. The docs think this case of pneumonia will take months, not weeks, to recover from.

Besides the challenges, Tyler is making steady improvements daily. The fevers are decreasing in temperature and frequency. Although they did not detect a fungus, he is on a general anti-fungal, which they are still deciding how long he should be taking without a known infection. Right now Ty’s focus is on trying to regain breathing strength so he can come off oxygen.