We’re engaged!!! More stories and photos to come but couldn’t wait a second longer to tell Team Tyler!
I just had a chat with an old friend from college days. It could have been a conversation from September 13, 2004, but it was today – 2012. It is like we took one small step in our goals, and one giant step in our lifetimes. Some dreams are not yet realized, but we are still working at them, and we still have hope. We came to the conclusion that goals have to interlace with life as it unravels, twists and turns and all. This lifetime is a marathon and we can only set milestones to get us through to the end.
A couple members of Team Tyler embarked on their own ‘marathons’ in the past weeks. Both chose to raise money for the Leukemia and Lymphoma Society’s Team in Training, and both trained long and hard to reach personal goals in their feats.
My aunt Marjan completed her half marathon at Disneyland in killer time. We are very proud of her accomplishment, especially because I know bad knees run in the family. Marjan trained and ran like a champ (now I just need to work a little harder to convince her to get into cycling- haha!).
The newest green bracelet member of Team Tyler, our friend Lindsay, participated in the San Diego Tri Classic. Lindsay just started seriously cycling a few months ago, and we have had the pleasure of showing her a few San Diego roads. Lindsay hit her time goal on the minute and said it was due in part to her Team Tyler cheer squad.
Tyler hit a milestone last Monday. He completed his final session of radiation therapy and got to ring the Graduation Bell.
Aside from finishing a major step in his treatment plan, this is also a momentous occasion because for exactly a week and three days more from today, Tyler will be free. No IV, no pills, no laser beams.
When Tyler and I would dream about getting him through the rough stages of chemo, we set the goal of taking a road trip. It was our light at the end of the tunnel as we were sitting in the cancer ward. As Tyler was hooked up to constant IVs, blood transfusions, pneumonia; very scary days, this was our light. So now that he has a break in his treatments, and his oncologist gave his blessing, we are off! Life happens, and we are weaving our goal in. This Saturday we will drive up the California coast- camping, biking, the works. A huge milestone for us, and we are beyond excited.
When we return in a week, Tyler will start chemo the next Monday. Until then, we have one free bird on our hands.
Many of you have seen this, but some of you haven’t. I’m proud of my sister and her work!
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
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?
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.
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.
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!
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,
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.