Hey Team!

It’s been nine months since my last update. Remember? The one in which I confidently announced the target publication date for a book project?

Well….the book is still a work in progress. But, the idea itself has evolved. Quite a bit actually.

Today, I’m excited to share what I’ve been working on:

Introducing CareCanvas: a simple tool for cancer patients, caregivers, or anyone facing illness or adversity, to take control of their care and recovery. 

A CareCanvas is a place to document your needs, and to outline a plan to ensure those needs are met. It’s an action plan for control freaks, a cheat sheet for self-care, a training plan for cancer fighters — it may even serve as the basis for some functional art.

And, thanks to a small grant I secured in November of 2019, I’m excited to share that I’ve developed a web-based version of the CareCanvas; and we’re accepting “beta users” — which is just a fancy way of referring to the early group of users that will help us test and improve the CareCanvas digital experience.

Feedback and input from beta users is critical, as it will help to inform the development of the more robust versions of the tool we hope to build in the coming months.

Anyone interested can register as a beta user here.

This is an exciting milestone in my quest to transform CareCanvas — which began as a book project — into my full-time job; to help people overcome adversity by creating a simple action plan for coping and self-care.

I’ve actually taken to wearing my green Team Tyler bracelet again over the past few weeks to help motivate me to get this beta site launched. And, I guess it worked, because here we are!

I will always feel a tremendous sense of gratitude for the love and support that Team Tyler showed me throughout my cancer journey. CareCanvas is my attempt to pay it forward.

If you or someone you know would like more information on this project please get in touch with me directly via email at: Tyler @ getcarecanvas.com or through the form here: https://www.getcarecanvas.com/contact

Lots of love,

–T

Today marks the five-year anniversary of my last dose of chemotherapy — my “chemoversary”.

It’s a good time to reflect and give thanks.

I learned a lot on my journey. Now – five years later – I’m looking back on my experience, and documenting the strategies I used to cope with my diagnosis and treatment.

I’m detailing my reflections in a book, and companion planning tool, scheduled for publication in December 2019. (more info here)

The thesis of the book is that: Creating a simple plan can help cancer patients more effectively cope with, and recover from, a life-threatening diagnosis. 

While this rings true in my experience, I believe that the book, and the tool will be more effective if it includes a variety of voices, experiences, and perspectives.

I’m currently looking for cancer survivors, or current patients, willing to participate in a brief (30-60 minute) interview for potential inclusion in the book. I would greatly appreciate your introductions and referrals!

If you or someone you know might be interested, please get in touch by filling out the form here: https://www.brightn.co/carecanvas

Thank you!!

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

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 (!!!).

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

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 →

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

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