Tell The World

After 12 weeks and 1 day of being away, Friday night I am coming home.

A Newcomer to the Treatment Game

It's been an eventful week in Manhattan. We had an earthquake, a hurricane, and I started a new novel therapy drug. I've gotten through it all relatively unscathed, except for the nausea and that unmistakable woozy headed feeling that every drug brings.

I'm now a cancer, three-time transplant, earthquake and two-time hurricane survivor (Dean 2007 on St. Lucia and Irene 2011 on Manhattan.) I don't think I'm going anywhere anytime soon. I've got about what? Three lives left?

Day +67 Scan Update

I got news yesterday that's pretty much just that: news. It's not necessarily bad, not necessarily good, just news. I prepped for that scan and that news on a blanket under a tree in Carl Shurz Park on the Upper East Side. The park is stunning and magical and it was the perfect place for both Craig and me to get our anxiety in check as we awaited my evening scan procedure.

My PET Scan did show a bit of uptake in two places: in my chest near the thymus gland and on the right side of my sacrum bone. These are two spots that have shown metabolic activity in the past and have been likely sites of disease. However, I do not yet have the full radiologist's report detailing what they think is happening this time around. PET Scans are finicky and ultra sensitive. Potential of false positives is high.

Day +66 Update

It's time to make some big moves with my treatment. This has successfully sent me up a wall in anticipation, worry, and confusion. Compounding those mental feelings are their physical counterparts. The past two weeks have been particularly rough for me: body aches, chest fullness, night sweats, back pain and increased fatigue. These feelings are not as foreign as the post-transplant side effects have been. In fact, they are far too familiar for my taste and I desperately hope that the lymph nodes in my neck and the tenderness in my back and hips are just my body repairing from the trauma it's been through.

If it is lymphoma creeping back in, it is not the end of the world, but it will make my recovery world riskier and more difficult. I've talked these symptoms over with my transplant doctor and we've decided that rather than guessing at what might be going on, it makes most sense to do another scan. A second scan is normally done around Day +90 anyway, so we're just bumping it up a bit. This way, we can better know what we are dealing with. Is the enemy again on the attack? Or are these just normal body rumblings surrounding all of the adjustments and growth happening inside of me? My doc wants to see diagnostic evidence and I completely agree with our plan.

Community Living

Most of the time I don’t want to wear a bra. Often I don’t like to wear pants. All of the time I prefer to be barefoot. But none of these indulgences falls under the “acceptable” umbrella at The Lodge.

My neighbors at home probably don’t appreciate it – as sometimes I forget that our house windows see both in and out – but I miss the freedom of eating a bowl of cereal in my undies – call me crazy.

I’m very tired of rules and more tired of other people breaking them. No one wants their first sight of the day to be a grown, barefoot man walking his germy feets on our kitchen floor first thing in the morning. I’ve got to keep my pants on. So should everyone else. Plus, my intestines are still too fragile to swallow that vision.