“Courage Through Cancer”

NATASHA_&_TYLER_WEDDINGWe agreed a long time ago that no news is good news, so I know you’ll forgive me for waiting almost a year to write an update.

All is well – Natasha and I got married in October and we moved into a new home in November; I’m working at an amazing creative agency (Parallax Branding + Interactive) with a bunch of amazing people; and, 26 months after being told those three little words (“you have cancer”), I’m happy to report that I’m 100% cancer-free.

Maintenance therapy continues. I’m still on the same combination of oral and infused chemotherapy (POMP), which means I only have to be in the infusion center once every 28 days. The monthly infusions leave me feeling less than stellar for a few days each month, but thanks to regular neupogen injections I have a semi-functioning immune system and have been fortunate to avoid further complications or infections. Knock on wood…

We were  humbled recently to have the opportunity to share our story in the UT San Diego, as part of a series called Courage Through Cancer.

Check out the article here: Courage through cancer: Infections add to cyclist’s tough battle

Special thank you to Doug Williams and to Clay Treska for giving us the chance to talk about our experience.

Until next time…

Lots of love!
–T

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Spring Update II

I’ve been dragging my feet on this update because I don’t like being the bearer of bad news.  Usually when we hit a rough patch I leave the updates to Natasha (or Leigh), but this time I’ll do the dirty work myself.

Brick Wall

Here we go again

Before anyone jumps to any conclusions, let me just say: I’m still cancer free.  And, thank God for that!

However, my chemo is on hold for the time being, as some complications have surfaced that must be addressed.  You may (or may not) remember the pneumonia I battled last year left a small cyst in the right upper lobe of my lung.  After various examinations, a CT scan, and a brochoscopy, we have learned that the cyst has become infected.  At this point, the doctors believe the best course of action is to have it surgically removed.

Natasha and I met with the surgeon last week, who told me “you look better than your chart,” and assured us that he felt confident the procedure would be a success.  Surgery is scheduled for May 8th, with anywhere from 4-6 days in the hospital to recover.

Physically, I feel strong.  I rode my bike this morning and have been able to get back into a regular routine at the gym.  Emotionally, I’m discouraged but not distraught.  There are a lot of reasons to feel good about this.  I am physically strong, I have a functioning immune system, and removing the cyst eliminates a potential source of future complications.  There are a lot of reasons to be thankful.

All that said, this still sucks.

I’m not going to say this is just another bump in the road, or hurdle to clear, because I’m tired of those analogies. This feels like another brick wall to run through. But we’ll do it.  What choice do we have?

I’m always finding inspiration in unexpected places, and earlier this week I was inspired by the Iditarod Trail Sled Dog Race, and the story of one author’s journey to follow the race from the air.  It’s a long read (with some beautiful photos) but highly recommended if you can find the time.  Here’s the link to the full story: Out in the Great Alone

One of my favorite passages comes all the way at the end, when the author comes to a certain realization about the whole race, and why people (and dogs) subject themselves to such extremes:

Who knew what would ever be there tomorrow? And it hit me that that was exactly the point of the Iditarod, why it was so important to Alaska. When everything can vanish, you make a sport out of not vanishing. You submit yourself to the forces that could erase you from the earth, and then you turn up at the end, not erased.

I guess, in a way, we’re all racing our own personal Iditarod, making a sport out of not vanishing.  I like that idea.

Will plan to keep everyone posted as surgery approaches!

Lots of love,
–T

Spring Update

Jack Wagner

Double Trouble (circa 2000)

We’ve been holding on to the premise that no news is good news, so with that in mind, it’s a good thing that this is my first entry of 2013.

Right to it then:

  • Still Cancer Free: I had a Pet Scan last week, and it came back 100% clean and clear. My previous scan (from December) showed some activity at the periphery of the mediastinum (around the edge of my chest), which the radiologist had attributed to the residual effects of radiation.  This activity no longer shows up on the scan, which is Great news.
  • Dose Adjustments: Maintenance chemotherapy hasn’t been without its challenges.  We’ve had to make several adjustments to decrease the dosage of my oral medications (methotrexate and mercaptopurine), and have had to take a week off here and there to give my body a chance to recover.  By nature, chemotherapy is immunosupressive, but it’s a fine line between acceptably decreased cell counts and the dangers of neutropenia.  Thank God (and science) for neupogen, and for antibacterial hand sanitizer (I don’t leave home without it).
  • Lhermitte’s Sign: Just when you think you’ve experienced every strange side-effect under the sun, along comes Lhermitte’s Sign.  Back in/around December, I started noticing strange nerve pain and electrical sensations when I looked down (chin to chest). Initially I ignored it, hoping it would go away, but when it got worse I began doing some research and decided to mention it to my doctor.  He confirmed our suspicions, that this was likely a residual effect of high dose chemo/radiation therapy.  Fortunately, in my case the condition is “self-limited”, meaning that it should resolve itself over time and without treatment.  It’s painful and unpleasant, and exercise makes it worse, which has added some additional excitement to my cycling and running.  I have a new found empathy for people fighting multiple-sclerosis – what a terrible disease.
  • RIP Jack Wagner: When I was 17 years old, I made good on a threat to bring home a dog.  He was wild and energetic.  He was funny.  He was smart.  He was loyal.  He was a biter!  And, for 13 1/2 years, Jack was a member of the family.  A few months ago, he was diagnosed with (believe it or not) lymphoma, and last week we had to say goodbye.  Natasha believes that Jack was sent here to take away my lymphoma.  What a beautiful, romantic, bitter-sweet idea that is.  I hope it’s true.

Battling cancer has made me hyper-aware of just how many people in my life (friends and family) are touched by this disease.  Today my thoughts are with those people in my life (and there really are too many) who have been recently diagnosed; who are in the middle of the fight; who deal with constant tests, scans and fears of recurrence; and to those, like Jack who’s battle is over, and who are in a better place – chasing squirrels in heaven 🙂

–T

Christmas come early: I’m Cancer Free.

Holiday Greetings Everyone,

This update is overdue, but for the most part, it’s safe to assume that no news is good news at this point.  To that point, I’ll get right to it: I’m cancer free.

I had a PET scan last week and, to quote the radiologist’s report, “there was minimal uptake at the periphery of the mediastinum,” but nothing lighting up in a way that would indicate relapse.  Translation: Everything is looking good.  The activity at the periphery of the mediastinum is common in patients that have received radiation therapy (which I have) and is no cause for concern.  I’ll have a full CT Scan in Feb/March, which will mark our next milestone on this journey back to full health.  Until then, I continue on the maintenance chemo regimen–a combination of daily, weekly, and monthly pills along with once-a-month IV infusions.

In November I had my eighth and final (God willing) dose of intrathecal chemotherapy.

In November I had my eighth and final (God willing) dose of intrathecal chemotherapy.

One year ago this week (December 4th, 2011) I was in the ER with back pain and breathing problems.  An X-ray revealed an unidentified mass in my chest, between my heart and lung. Four days later, on December 8th, I was officially diagnosed with stage IV lymphoma/leukemia.  As we approach the one year anniversary of my diagnosis, I’ve been awash in a variety of not-so-pleasant memories.  It’s crazy to think that it was only twelve months ago that this whole chapter of my life began.  Continue reading

Back On The Grind

Infusion Center Shades

Another day at the office

The honeymoon is over.  Back from our California road trip.  Back to reality.

Don’t get me wrong, Tash and I couldn’t be happier, and our trip couldn’t have been better.  I wrote earlier this week in my journal that if our road trip had been the last week of my life, I would’ve died a happy man.

It was as close to absolute perfection as I could imagine.

The sunny beaches and scenic valleys of Santa Barbara; red woods towering above and craggy cliffs plunging below Big Sur; getting lost in the sights and sounds and tastes and smells of The City; the vine covered hills and quiet roads of Sonoma.  I couldn’t have asked for more.  And to be able to do it all with my best friend, and to come home with a fiancee to top it off…icing on the cake. Continue reading

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!

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

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!)

 

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.

Treatment Update: Day 161

After a great and long day of deliberation yesterday, the specialty team following Tyler’s case has come to one agreement: they are not confident they know the full story of his current state.

His situation is getting somewhat complex. Yes, he has bacterial pneumonia, that is showing up as ‘worse’ in his most recent ct scan. Yes, he has tested with in vitro resistance to the latest slew of antibiotics he has been taking. Yes, he did have several cavities in his lungs burst and show damage from his last hospital escapade. Yes, it is possible the fever is still the pneumonia healing. But. What if it’s not just that?

Its enough of a lingering question to make the team want to conduct another bronchoscopy this week. Following the nightmare of the first procedure, this was a tough decision. For those of you who don’t know, Tyler ‘woke up’ in the middle of the procedure, with a tube down his throat. This is the kind of thing they show on TV, patients able to feel procedures and unable to communicate. They increased sedation and wreaked havoc on his liver that was already in a compromised state. Due to his inflammation and movement, the bronchoscopy was deemed ‘unsuccessful’, they were not able to obtain a good sample. The result was traumatic to say the least. Therefore, a second bronchoscopy is a big decision. It became somewhat easy to consent to after hearing that an undiagnosed hidden fungal infection could be devastating. This time the attending pulmonary doctor will perform the procedure and he will be under full general anesthesia so they can get an ideal sample.

In the meantime, he is trying new antibiotics to calm the bacteria while he waits for the bronchoscopy on Thursday, possibly.

He is still in quarantine until the virus tests are revealed tomorrow. He can have visitors but they must fully gown up before entering his room.