AdventuresInLivingTerminallyOptimistic

You don’t know how much you will miss something until it is taken away from you.  Two weeks ago something was taken away from me: my ability to walk without assistance....

Balancing the need to conserve energy and it being unfair for the entire Facebook & Twitter social media Universes to know the latest on me while you don’t, I am simply...

What a long strange trip the past month and a half has been as I started my first immunotherapy treatment (atezolizumab + FOLFIRI + bevacizumab), as I reported in my earlier...

This past week we welcomed a new member to the family – Blink! Like many good things in life, he chanced into our life without much warning.  I went out to...

So this is what GOING OFF-ROADING – EXPERIMENTAL TREATMENT STRATEGY STYLE feels like… What an interesting couple of weeks I have had since my last medical update (link above)!  “Interesting” is a...

Yes, it is time for another medical update! It is funny… the original intent of this blog (before I published the first post) was for it to be a vehicle to...

This week is one of those weeks where a bunch of important things are happening, across a wide range of my life!  I was trying to think of how to organize...

All I could think to myself was “WOW”!  Similar to my Charlie Rose Show experience last March, this email came out of the blue as well… I received an email from...

I went and got a haircut this week.  No that was not meant to be the single most boring start to a blog post in the history of cancer blogging –...

First of all, sorry that this post has been delayed so much!  Last year I was able to write up my ASCO post with almost no delay but unfortunately this year my...

I wanted to give an update – both in how things have been going and also what my next plans are (hint: I have to arrive at the hospital for a...

Not with a bang but with a whimper… that is how my cancerversary – my fifth cancerversary – snuck up on me this year. In previous years, I started thinking about...

I wanted to write a quick post update, this one to report on how my “Selective Internal Radiation Therapy (Y90-SIRT)” procedure done on the right lobe of my liver went yesterday. We won’t...

Well the day is finally just about here!  After a longer than wished for wait over the course of May, tomorrow I go in for my first liver-focused therapy – my...

The title says it all, although it should also be noted that this approval also covers other/all MSI-high cancers, not just MSI-HIGH CRC!.  Links below.  The first time a checkpoint immunotherpy (pembrolizumab (Keytruda))...

What a week I had last week!  Taken overall it was a GREAT week.  It was extremely hectic and not without some blemishes towards the end, but overall… it was a...

ASCO-2017 abstracts were released yesterday and there is one study that really stood out for MSS-CRC: Abstract 3002.  The study is for the ongoing clinical trial #NCT02650713 which is testing an exploratory...

>1,000 Hits… my mind was blown away.  My cancer had returned and I was now diagnosed recurrent Stage IV.  I knew at that moment that standard of care therapies would only...

“Ironic” – as shown in the above pictured definition of “Ironic” from the Urban Dictionary – is a word that is often misused in contemporary life but when it comes to...

A brief update… and an explanation why I have been slow to write update posts recently… My disease has really taken off into a much more aggressive form with a significant...

Cover photo by Ariana Drehsler for STAT.  Source: STAT News – here. As you know I work with MANY different CRC organizations – The WunderGlo Foundation, Fight Colorectal Cancer, COLONTOWN, The...

There is something deeply visceral about your brain… It is the center of thought… It is the center of your being… it is the center of who you are… All of...

Both psychologically and practically it is interesting how a cancer patient’s attitude and approach to chemotherapy changes over the course of a “Cancer Career”.  That is a phrase that just popped...

March 1st is the beginning of Colorectal Cancer Awareness month. I chose to commemorate it in this way – in the hopes that these pictures will bring awareness of the EXPLOSION...

Well… a blog post I certainly don’t want to write and I did not plan on writing… I was told to never bury the lead of a story – so here...

As readers of this blog know, physically I have been going through a rough patch the past 6 weeks or so.  Thankfully, something that is now changing! The sudden ramp up...

What invigorates me to fight the way I do?  Well beyond basic self-preservation for both me and for my family – it is the sheer amount of needless loss I see...

Just a short IMMUNOTHERAPY CLINICAL TRIAL update post today- The phone call just came in last night: The Clinical Trial Countdown Clock has officially started! As a reminder, here is the...

An incredibly intense series of events have been happening to me medically over the past month – life changing events for both me and my family.  Things were happening so quickly,...

I had hoped to start 2017 out with a full personal update blog post but there are so many intertwined parts currently in motion (and things currently unclear being clarified!), that...

This is a blog post I had been hoping to write for a long time! The first published (today in the New England Journal of Medicine) “clinically disease free” success achieved...

SCHEDULED FOR FRIDAY (12/23) – NBC NATIONAL NIGHTLY NEWS with Lester Holt!  NBC Nightly News recently interviewed both I and a patient/caregiver couple helped by the COLONTOWN CLINIC, a project supported by...

In the immortal words of our most recent Nobel Prize Laureate Bob Dylan , the times they are a changin’…  This morning I will be having my final Full Fury (FOLFIRI)...

Cobimetinib  + Atezolizumab  might have grabbed all the Microsatellite Stable-Colorectal Cancer (MSS-CRC) immunotherapy headlines in 2016 but quietly in the background was a second published/presented  Phase 1 Immunotherapy Clinical Trial with...

Pain. I’ve been very fortunate over the past over 4 ½ years since my cancer diagnosis.  I had some pain immediately before my diagnosis from my primary tumor but ever since...

When you are first diagnosed with cancer, many things stream through your mind at light speed.  Being there for your kids, impending major changes to lifestyle and life plans, and right...

As long time readers of my blog know – I have been in a quandary since I was diagnosed with (presumably cured) Stage 1 melanoma in January 2015.  That diagnosis, even...

This is a lengthy science post I have been debating whether to write for over a year.  Many fellow patients have been asking me to write it but I have hesitated....

Photo graphic courtesy of STAT News, Photo by James Cuevas I hear questions all the time for an update on my personalized “neoantigen” immunotherapy research project – a project I first wrote about...

My latest column for the Philadelphia Inquirer newspaper published today.  I continue to be very thankful that they have given me an outlet for both sharing aspects of Stage IV cancer life...

Hope – it is such a simple, yet complex word. A short word that is easy to explain on the base-level but it can be incredibly complex to comprehend all the...

I had my post-summer-chemo-break CT-scan on Wednesday.  Regrets & worry started to try to enter my consciousness.  They were unwelcome invaders and to be honest, rarely seen or felt in my...

Friends. Family. Brothers. Sisters. Those words get used a lot in my current Stage IV life and they’re not necessarily referring to the people you would expect.  They’re referring to fellow...

The CT-guided lung biopsy mentioned in my previous post was completed today at the University of Michigan without complications! It is intended to provide both DNA and RNA sequencing data for my personalized...

What do you do when two fully qualified major medical centers give you opposite medical advice?  What do you do when the decision impacts your personal colorectal cancer (CRC) immunotherapy research...

This post is primarily for Stage IV colorectal (CRC) survivor and caregiver readers (and indirectly for Stage IV lung cancer readers as well, see below!): An interview with a Dr. Johanna...

I just wanted to give a brief personal medical update and my related summer plans! With the exception of my diagnosis summer (2012) when potentially curative chemo was given ASAP, I...

Last year I was lucky enough to be chosen as a Featured Survivor in the annual Colondar 2.0 magazine  that The Colon Club produces each year. As a part of being chosen,...