What a Long Strange Trip It’s Been

I don’t post very much or very often. I’m more of a “lurker” ‘round these parts. Because of the people on this forum, I’ve had my hopes bolstered, fears quelled, and most importantly, a TON of questions answered. I hope what little I’ve posted has given one or two of us strength on this arduous journey.

My journey took a sweet turn today, as I’ve reached what I feel is the last milestone (aside from regular follow-ups with various doctors that is). After a clean PET scan, my rad and chemo docs allowed me to get my port removed. And at 1:20 this afternoon, that milestone was reached. Finally. Not that it bothered me. Heck, I mostly didn’t even know it was there. But it was there - as a reminder of the surgeries, the tracheostomy, the PEG, the chemo, the thirty rad sessions. Removing it was a signal that I’m done. Sooooo done.

And now? Still getting used to the “new normal” as so many have put it. Which so far hasn’t been as bad as it could be. I’m more than seven months post-treatment, and I’m eating nearly everything I want, and putting weight back on. Taste is close to being back to what it should be, and the dry mouth is now at a “comes and goes” stage. Swallowing can sometimes be a challenge, so I try to be careful when I eat. And to that point, wraps are better than sandwiches, I’ve discovered. Less bread to dry out the mouth!

To any and all who may be embarking on this trip (survivors and caregivers), this can be beat. I’m living proof. And so are many others who maybe had it worse than me. I remember as I left Yale New Haven that day last May after I was diagnosed, and the plan of attack was put in place. The lead nurse for the ENT group told me to keep one thing in mind as I left, even if it was the only thing I remembered from that day: “This is for cure, not treatment”. Looks like it worked. She gave me hope. Hope is what I want to give all of you.

Peace,

Mark