The Big Boys in Boston

It never fails.

It doesn't matter how long I've been sick.

It doesn't matter that I've been traveling for treatment for almost two years now.

The night before any major set of appointments I'm anxious.

Sometimes I get angry and cranky. I snap at my family.

I put myself to be early to hide so my attitude doesn't spread.

My disease may not be contagious but my frustration can be.

I was too exhausted and elated from our vacation weekend to be irritably stressed out Sunday night.

Instead, I tossed and turned.

I woke up every hour on the hour like somehow I would channel my inner Rip Van Winkle and sleep through my appointments for the first time in four years.

J slept badly too.

Test anxiety is a family thing.

All that seemed to dissipate for the first time ever yesterday.

J and I didn't even reach for our Garmen once during the entire trip.

We've been traveling so long, it's possible my jeep compass could drive itself down Longwood to Binney St and find valet.

I think our overall laissez-faire attitude was due to something even better than finally getting comfortable with the trip after years of treatment: I was feeling good!

Despite knowing the flaws in my PET scan, I handled a whole weekend vacationing with Xander (safely in Westchester County, NY. My father, however, was marched by NYPD to safety out of the M&M store in Times Square. Another friend actually got video of the bomb!).

As far as health goes, I no longer rely on blood tests and scans to tell me how I should be feeling. I listen to my body and judge how healthy I am based on what I can do.

Feeling well means I didn't even bring my portable O2 tank to NY with me!

We went to the Palisades Mall (that's the second largest mall in America people) and I managed to shoot hoops with X for an hour and a half straight at KrazyCity.

I think I could even coach soccer with assistance this summer. Last year I had to buy a bull horn because I couldn't even call for subs!

Even better, Both the big boys in Boston (Alyea & Wenhouse) agree: I'm doing really well!

My lungs are clear! No wheezes, snap, crackles, pops or otherwise adventitious lung sounds of unknown etiology (How is that for a tongue twister? I just wanted to sound smart.).

Dr. Weinhouse said the chronic pain I experience associated with my lungs (one of the most bothersome symptoms of my many ailments) is possibly due to hyperinflation afffecting the surrounding muscles.

With bronchiolitis there is air trapping in the lungs. I take in enough air but can not breathe it out. The air just doesn't escape causing my lungs to hyperinflate like a balloon that you keep blowing into.

Nobody freak out! My lungs will not pop, but my muscles do need to adjust and the adjustment is painful.

Dr. W also ordered me to start tapering the prednisone again.

This morning I took 15mg instead of my usual 20mg. He wants me to have pulmonary function tests to establish a baseline while I'm feeling as well as I am.

He has ordered me to be down to 10mg of prednisone daily in 4 weeks as long as my body is handling the taper.

I'm in awe, shocked and amazed. When I started steroids in December I thought I may never get lower than 20mg. Twenty mg was the dosage at which I was comfortable staying on indefinitely.

But look at me now, tapering like a wild woman.

Dr. Alyea was not so trigger happy with the taper. He did decrease my photopheresis treatments though!

Yes, after twelve weeks of twice a week treatments I can now trek to DHMC once a week!

I feel like I've graduated. Someone should throw me a party.

The original plan to stay in treatment until September (a total of 6 months) remains.

As far as the probable cancer reoccurence, Alyea suggested the actions we are all ready taking: decrease the prednisone in hope the graft will fight off the diseased cells. Watch myself closely. Report any symptoms quickly. Repeat the PET scan in 6-8 weeks.

What a coincidence! My next appointment with the big boys in Bean Town is in 6 weeks. I'll be sure to have my tests before I see them next.

I do have pictures of my shenanigans. I'd love to share them, but they are digitized in my new camera, the one I had to buy to replace the one I lost causing the lack of videos.

No promises, but hopefully I'll be getting some video footage up once I get an SD card. Then you all can really experience my life.