Sixteen More Days…

I’m a five year old. That’s my new age, and I am going to stick to it. This whole grown-up gig is just not what I imagined it would be all those years ago. Technically, with an airway of a five year old, it seems a very plausible argument. One is the age of their youngest anatomical feature. Fact check that…I’m certain it’s correct.

I’ve finally processed the whole “non-responder” official statement by the NIH. It still feels like salt in a wound, but I’m walking forward again and that’s progress. The good news is that there are trial participants that are responding, and I am able to cheer that just as loudly as I would have my own response…a response that was meant to be a yes, but it did not get the invitation in the mail apparently. Which, leads me to today’s posting…an update…for those of you who have followed this journey.

Sixteen days from today, I go back into the OR. My trachea, it seems, had a little conference with the RRP over the past few months, and they decided that I needed some miracle grow tossed into my daily life. A trip to Mayo, a couple of weeks ago, confirmed what my lack of activity tolerance had already told me….I was compromised-not by the Russians, but by papilloma-little creatures that remind me of what cauliflower probably tastes like-hint, I have never tried cauliflower-it remind me of white brain matter. In an effort to increase my level of care, we decided to bring a second surgeon on board with my team. So, matching up schedules, and my insistence that I be able to attend my niece’s graduation and welcome my Josh home for bit…May 31st is the date and we will be on an every six week rotation to the OR for the foreseeable future. This means….I’m lazy by necessity, I have far too much time to read up on health policy, governmental affairs, changes in religion, etc….I should consider taking up gossip magazines…far less stressful. Cleaning the house is a multi-day task…as when you have the airway of a five year old currently, it’s dust or sit and breathe. I’ve tried ignoring that innate desire to breathe….it wins…just so you know…your lungs + brain will override just about all that you desire to do. The news in pulmonary continues to be “concerning,” but we are going to attack it a different way after surgery….and I have every confidence that I have given my pulmonary enough lectures on how it’s really not fitting into my whole “empty nester” plans…that I can see it listening and doing what the next drug tells it to do.

Avelumab and I did not match….so the next drug on the horizon is systemic Avastin. If we see results after four doses, then we will work towards a maintenance dose cycle. First hurdle is getting off-label usage approved by insurance, and if that is denied, then approval by manufacturer for compassionate care. If Avastin doesn’t play well with the papilloma, then I will have to consider at least a wedge resection to take out the two that are not behaving.  hqdefault

So, there you have it…the health update. Such as it is, it’s my current sitting place. As a new five year old, it works well. I can color without any worries that I am engaging in an activity that doesn’t match my birth certificate age. I can choose to eat Fruit-Loops with my fingers if I desire, and flavor-blasted Goldfish are an acceptable food group now. Nap-times are considered mandatory, but given I cannot sleep in the daytime, I have chosen to just be a temperamental five year old in the afternoon….so far I have not injured anyone..but there are still sixteen days to go!

In what can only be considered “divine appointment” of timing, I have been in a Bible study of 2nd Timothy this past semester. I will blog on it more later, but this has stood out to me for weeks now-

“You have a provider that wants you to be more than a survivor.” Beth Moore

I’m still very uncertain as to what that sentence really means for me right now, but I know that sentence and the fact that God didn’t give me my miracle in Avelumab, that maybe He is choosing to make something about my life the miracle..well…it’s moved me forward.

Enjoy breathing….enjoy talking…for so many people near and dear to me, and myself, those are luxuries at times. Make those breaths and words count!

Peace out…and PS-Intelligentsia Coffee….you need some in your life.