I’m done!

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After 32 months of in patient and out patient treatment, and all of the ups and downs along the way, 32 months later and here we are…all finished with maintenance chemo. God-willing I’ll never have to go back for more. It’s a strange, surreal kind of feeling. I’m not sure it’s really sunk in yet…and who knows what the future holds. But I think it’s important to celebrate the small victories along the way, and this is definitely one of those milestones. Thanks to all of you, my family, friends, and supporters for being there with me every step of the way. Life is crazy.

Love you all!
–T

Stop the Presses: No Surgery!

If there’s one thing I’ve learned on this journey, it’s to expect the unexpected.  But I definitely did not expect the news we got this afternoon: Surgery has been cancelled (!!!).

Eleventh Hour

Saved at the 11th hour

I have to say, when my phone rang this afternoon, and I recognized the number as the pulmonologist, a lot of scenarios were racing through my head – but “surgery has been cancelled” was not one of them.

After reviewing my CT scan from this morning, my doctors (and there are quite a few of them at this point) were shocked by the dramatic improvement they are seeing. So much so, that the surgeon no longer feels that the procedure is necessary at this point.

For the time being, the medication and my immune system seem to have the infection under control.  I have an appointment scheduled with my primary oncologist on Thursday to discuss re-starting chemo. The saga continues…I am in shock.This whole time our mantra has been “keep going”, but a more fitting theme might be “what next?”.   I joked with my mom this afternoon that you can put “what next?” on my tombstone – just not anytime soon.  Life: What a roller coaster ride.

Will plan to keep everyone updated as next steps become clear.  Until then, THANK YOU for the emails, texts, cards, prayers, positive vibes, and whatever else might have been coming my way.

Lots of love,
–T

One small step

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.

Our Stunner of a Runner – Marjan!!!

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!).

Lindsay the Triple Threat!!!

 

 

 

 

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.

Tyler getting snapped in and lined up

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.

At the start of the Red Sea, Two winners watching a huge LOSS!

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.

Continue reading

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

 

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.

Treatment Update: Day 163

Ty had the bronchoscopy under general anesthesia today at 10:30 am. The procedure was deemed a success, as the pulmonologist was able to obtain 4 biopsy samples and a wash sample of the lung. However, the procedure caused a stir-up in the lungs, releasing bacteria and sending Ty into fever. This was to be expected, as the body responds to the sudden surge of bacteria, possibly into the bloodstream. Hopefully, as this stirred-up bacteria gets hit with antibiotic, the fever and rigors will subside. We will find out results of the bronchoscopy in a couple days.