Quick Update

It would seem that, as much as this trial was supposed to be a targeted therapy, it didn’t target what we hoped it would. I say that, but I want it to be clear that I am not resentful. The gift, opportunity and blessing that it is to have access to clinical trials far outweighs the negatives. Yes… I’ve participated in 3 trials so far… one of them worked. But that one worked WELL. I likely wouldn’t be here today if it weren’t for that trial. That is what I am constantly grateful for. 

The past 2+ months have probably been two of the most consistently challenging months for me since my original diagnosis and surgeries in 2018. While we can not definitively attribute what I’ve been experiencing these past 2 and a half months to the trial (there are many variables) the “why” doesn’t matter at this point. 

3 weeks ago I couldn’t get off the couch without causing a coughing spell. I dreaded the idea of a flight of stairs. I stopped being able to even walk the dog. The violent coughing and shortness of breath were too much. 

While all this certainly started in earnest with a diagnosis of pneumonia in late November…  it has honestly felt like a slow burn since my radiation a year ago. I’ve thought of that lobster-in-a-pot analogy so much over the past year. I could never report anything significant from one week to the next. But my training and physical abilities kept declining no matter how hard I pushed or trained. 

In Nov/Dec (post pneumonia diagnosis) this all came to a screeching halt when I couldn’t cycle, walk or strength train without gasping and at times coughing to the point of vomiting. 

Yes… it sounds crazy that I’d push that hard. But when exercise has been my mental health maintenance medicine for the past 20 years… and then the fact that this disease is taking that from me… is like a double whammy. “I’m going to make you feel sick AND take away your coping mechanism”

F@€¥ing cancer!!!

To make a long story short… we don’t have a clear understanding of why I’m experiencing what I am… therefore also trying to figure out how to solve it. Currently steroids (the duct tape of medicine as I like to call it) has been helping. But as I’m starting to come off the steroids… I feel like the cough and shortness of breath is increasing. 

The kids seem to struggle with it more than they have with things in a while. The cough reminds them of my dad’s last days. It does sound the same… it’s upsetting to all of us.

I'm about to start another "standard of care treatment" shortly.  We're hopeful that it will allow for some symptom relief and time to "catch our breath" (pun not intended).

There will be more updates shortly... and while I really want to switch updates to Instagram... I'm trying t mitigate what pops up on my kids' feeds vs. what I'm willing to send to the "boomer" social media.  

TBD...