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.

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.

Rehab

Like Lindsay Lohan or Tiger Woods I have been – and continue to be – in rehab. Though my rehab isn't as glamorous as crack or sex addiction. Just another cancer patient trying to get my body and my life back to a less tumultuous state. And it's a self-inflicted rehab so no ankle bracelet needed to alert the authorities if I get off track.

Every day has been a little bit better than the last, which is encouraging for sure.

My taste buds have really made a comeback. I had wild mushroom, spinach, goat cheese and pine nut stuffed poblano peppers last night and was melting at the party of flavors. It's wondrous not to have everything taste like Metamucil – or like nothing at all. The appetite is getting there as well. Still small, but it's nice to know the feeling of hunger again. With the start of the summer season also started our first season as part of a crop share with a local farm. The CSA allows us to have access to a bag full of fresh fruits and veggies every week, plus access to pick-your-own herbs, flowers and more veggies. I'm psyched for the local, chemical-free nutrition.

My legs were covered in raised flesh-colored bumps which made my skin feel as if it were covered in fish eggs but now a week after they popped up they seem to have subsided. However, they have moved to my face. When I run my hand over my cheeks and nose it brings back shudders of my horrible middle school acne days. The bumps are at times itchy and a bit red but I think more noticeable to me than the outside world – at least that's what they tell me. But I'm assured that they will move on out just as they did from my legs. If that's the worst that my body is reacting after what happened to it, I'll take it!

I've been going to yoga, hiking, walking and even had a day of kayaking. I'm taking it slow and being patient, but I don't let a day go by where I don't push my body to do something to get it back into shape. It spent way to much time atrophying in a hospital bed. Yoga class is hard for sure, but I really enjoy being back at the studio. I like having the instructor there to adjust me as needed and to be surrounded by others with a similar mindset in such an encouraging and welcoming atmosphere. I'm at once amazed at how much strength and flexibility I lost over the past few months and at what my body is still capable of and the strength it held onto. I can walk for miles on end on flat ground without a problem. My endurance remains but it's the uphills and quick exertions that are tough. But as I said, every day gets a little bit easier. I will be running the 5K in the Hartford Marathon in October ... if not an earlier race.

I still need a daily nap, but the nap duration requirements have lessened. An hour is ideal and the pass-out point usually happens around 3pm. That's when I hit the wall. I wake up several times throughout the night and look forward to an unbroken sleep some day.

Overall, I'm just listening to what my body needs and trying to comply ... though pushing it past its limitations at times as well.

The timing of this rehab period couldn't have been better if I planned my cancer relapse myself. The weather is beautiful this time of year and the sun and warmth and thunderstorms and passing showers are nothing less than cathartic. So is time with Sammy the wonder dog, always good for a loving snuggle or a raucous romp through the woods. Craig is wrapping up school next week and will have a couple weeks off before his summer gig so we can spend time healing/enjoying life together.

The plan is for me to ease back into work after the July 4th holiday. I'm really looking forward to getting back and to restoring my sense of purpose while being part of the greater community. It'll also be nice to feel like an accomplished adult again rather than a sick little kid.

Now if my hair, eyelashes and eyebrows would start growing back then at least I wouldn't look like a cancer patient anymore, but I won't be escaping that anytime soon. I'm as hairless as the Pistons' Charlie Villanueva, but not nearly as good with a basketball.