Tuesday, September 23, 2008

Lost and found on the way to the beach

On Sunday, the first day of fall, (and Day+103) I finally got to the beach. I never went last summer, because of my relapse. I didn’t go this summer, because I was still in the early recovery phase after my third transplant.

Since I had a clinic appointment in Boston on Monday, I planned to go to the beach just north of the city with Katryn, a good friend from my Vassar College days. She lives in Portland, Maine; we decided that Plum Island, Mass., (next to Newburyport), was about equidistant for both of us. We’d picnic on the beach and take a walk, and then I would spend the night in Newton, at Diane’s, so I’d only be about half an hour away from Dana-Farber, as opposed to my usual two hours.

One thing I do very well is get lost. Which is, of course, what I did on my way to meet Katryn. In my defense, I have to say that Google Maps sent me via some unmarked streets. When I got off the highway I found myself in Salisbury (Mass.), trying to get directions. I can go inside places now if I wear a mask, but I thought it would be easier to find someone to ask outside. Everyone seemed to be from elsewhere, so I finally went into a convenience store, where a very nice clerk gave me a different set of directions, including, of course, an unmarked road.

Lost again, I pulled up in front of a yard where an older couple stood. When I told them my plight, they said, sympathetically, that it looked like I had been driving around for quite some time. They gave me a new set of directions, but my eyes must have glazed over, because the woman offered to get into her car and drive me to the turn I needed to take. I thanked them profusely, took her up on the offer, and I was on my way. The turn-off to the island was unmarked, so I panicked and thought I was lost again.

I called Katryn, who was already there. “I’m NEVER going to get there,” I said. “Yes, you will,” she said. We stayed on our cell phones until I saw her standing in front of the parking area where we were to meet.

It’s a beautiful beach with a long stretch of shoreline. We walked for a long time, enjoying the breeze and the blue sky and the sun and the boats. We walked with our feet in the cold water, and every now and then a wave snuck up and splashed us.

It was great, and a real adventure for someone like me who for a long time has been nowhere except the hospital and the clinic.

On the drive to Diane’s, I thought about how my little adventure could be a metaphor for times when you're lost. You’re driving along unmarked streets and you feel like you’ll never get anywhere. Then a stranger (I hope I’m not sounding heavy-handed here by possibly even calling her an angel) helps you find your way. And, suddenly, the vista opens up and you arrive at a great spot!

The next day I had my clinic visit. My platelets went up to 148 – almost normal. My WBC was down a little, to 2.7, and my hematocrit was down to 30.9, earning me another shot of Aranesp. I wasn't really concerned about these counts, because they were pretty high for me. And It was not unexpected for my counts to go down, because I am taking Valcyte, an anti-viral which can suppress counts. I'm taking the Valcyte because I tested positive, for the second time, for CMV (cytomegalovirus), which affects people with weakened immune systems.

Before I got the car, I put on my mask and went into the nearby Starbucks to get a coffee for my drive home. It was my second time, and I still got a kick out of it. My counts weren’t normal, but I was doing things that made me feel like a “normal” person.


susiegb said...

Lovely photo Ronni! I've hardly been to the beach for ages either and I don't have the 'excuse' of a transplant! Glad you finally found your way ... :)

Wow - CMV, that's scarey stuff. I'd never heard of it but just the other day someone on the MCL list found he had it in his eyes, it was just lucky it was discovered in time! Glad you're onto it and taking the drugs!!

Howard said...


Just read my friend Brian's blog and stopped by to read yours. It's nice to see you looking so well at the beach.

Your post is great, the smile even better.

Stay well,

Susan C said...

You're making me long to go to the beach too. I'll have to follow your lead.

I too am directionally challenged. I used to tak e getting lost in stride, but now it makes me nuts.

I think your counts are amazing!


Anonymous said...

What a great picture! Reminds me of our visit to the Maine beach with Debbie R. in 2003. I love your thoughts and your writing. Remember: The third time is the charm!

PJ said...

You look terrific. I have one question: How come you have all that hair at day +103?

Jim said...


You look great. Dori wants to know about the hair, too.

Ronni Gordon said...

So about the hair:

I lost it all last August when I had my induction, but since I only had the chemo "lite" with both transplants, it didn't fall out again. The hair is actually crazy. It goes in all directions. My sunglasses were holding it down in the photo. Thanks all for your kind words!

Brian Koffman said...

The beach is so healing, though I hate having to put sunscreen on my bald pate. Actually my hair is coming back 85 days post transplant, this time as a Brillo pad. What happens is that chemo messes with the hydroxy and sulfide bonds in the follicles and the result is kinky curls.
Great to see you with the wind and the waves
Be well

Anonymous said...

Ronni --

Wow! You look great! So glad to meet you and read your inspiring story. Thanks for touching base with me.

I am just starting to run and loving every minute of it. The beach is beautiful up there -- better than any Florida beach I've ever been on.

Hang tough. I'll be watching.

mieke said...

That's a gorgeous photo babe! I'm so glad you got yourself (with a little turning around) to the beach before it gets cold! There's just nothing like staring out over water and getting that calm zen feeling from it...