Tuesday, February 28, 2012

Guest post for Cure magazine

Hello Readers,

Here is a link go a guest post I wrote this month for Cure magazine.

It basically recaps my medical journey, but from a slightly different angle for a new audience.

I guess I'll just let the post speak for itself.


Sunday, February 26, 2012

St. Pat's, here I come

That's the St. Patrick's Road Race, scheduled for March 17 in Holyoke.

Until a couple of weeks ago, I wasn't so sure I was doing it.

Too hilly, too much stress, too slow, bla bla bla.

I haven't run the hilly 10K for five years, and I just didn't think this was the year. I've been running, but I haven't gotten up to that stage where it's something you want to do. Once I get going, I like it, but more often than not I have to push myself out the door.

It's the opposite with tennis. No matter how many mistakes I made the time before, I always want to go.

Ben asked me about the race a couple of times, and I said I thought I wasn't up to it. Then he texted a couple of weeks ago that he had signed up...and all of a sudden I found myself doing the same.

Last week, I ran 5.2 hilly miles one day and three flat ones the next day. (I know the exact distance because I checked it out on MapMyRun.com.) Two days in a row was unusual for me, and after I did it, my legs felt incredibly painful and stiff.

I've gotten a little faster in general, but on a couple of the hills, I looked down at my slow-moving feet and asked myself, "Are you running or walking?" My inner coach said, "Pick up your feet!"

There's something about cancer, chemo and coma, plus muscle-weakening prednisone, that makes your feet heavier. And then of course there is the age thing.

Today I felt pretty good and went out for what I thought was around six miles. Some birds helped me along, the hills and fields looked beautiful in the late-afternoon sun, and I began to enjoy myself.

When I got home and measured it on MapMyRun, it turned out to be 5.89 miles. Pretty close!

I stretched a lot afterward and am planning on skipping tomorrow except for going to the gym, and hopefully getting out the door will be easier Tuesday.

Meanwhile, if I get nervous about the race, I have to remember what my local doctor, Ronald Berger, told me recently: "You'll probably be the fastest bone marrow transplant patient out there."

Wednesday, February 22, 2012

Goodbye Voriconozole

What with the slight trauma from last week's "face fry," which, by the way, is now peeling like a bad sunburn would, I didn't get around to mentioning some news from my Dana-Farber visit.

Dr. Alyea and Dr. Marty said they were letting me stop the Voriconozole, aka Vori, an anti-fungal drug I have been taking for more than three years. Anyone who takes a lot of pills knows that it lightens your load to get rid of any of them. This one, taken twice a day, felt especially weighty, tied as it was to the fungal infections I repeatedly got.

It makes your skin especially sun-sensitive and is partly responsible for the dark spots on my neck and face. Last spring and summer I got a lot of sun exposure from dog-walking, running, and, of course tennis, often played where there was no shade. I wore a hat and applied sunscreen, but there's only so much you can do.

Alyea's stated reasoning: "We have to get you ready for outside tennis."

Gotta love that guy.

Back home when I pulled out my bag of pills to put them in their boxes for the week, I took out the Vori and slid it to the end of the table. Woo hoo!

I also got to decrease my dose of magnesium from one pill three times a day to just once a day. I took magnesium for support starting during my hospitalization and just kept taking it. Another sign of forward movement.

But then there's the prednisone, which I won't be able to stop for quite a while. My liver function is better, and I asked if I could go down from 5 mg. a day to alternating 5 with 2.5, which I did once before.  Alyea pointed out that when I did that, my liver got worse again. I know that 5 is a small dose, but I still would like to get off it, which would mean lowering my pill load even more because then I could get off the preventatives Bactrim and Valtrex.

He pointed out that he treats some bone marrow transplant patients who stay on prednisone indefinitely.

And, he reminded me, "This is a long haul."

That was sobering to hear.

I don't think I'll ask about the prednisone again. I'll just be thankful it is keeping the GVHD of the liver in check and that at this low dose, I don't have any of the side effects I had when I took more.

Friday, February 17, 2012

My glamor shot

I guess there is no sense of posting a photo of yourself if you look bad, but it's another story when you look really really weird and scary. So here I am, looking weird and scary.

I posted a similar photo about a year ago when I first had Photodynamic Therapy, or PDT, and here is a similar one taken yesterday while I was prepared for the procedure at the dermatologist's office in Boston. First, the technician applied a light-sensitive cream, covered me up, and had me sit in a darkened room to incubate for about an hour.

Then she put an intense light on my face for 15 minutes while I waved a hand-held cold blower on it. When it was over, I was bright red, as though badly sunburned.

The purpose is to remove pre-cancerous spots before they turn into something more serious, as a couple already have. This kind of spot is likely to appear at some point in people like me who have a lot of sun damage, but chemotherapy sped the process up.

When I was done, Dr. Lin came in and and used a cold gun to zap some spots on my hand and a few left on my neck.

Not a very fun visit, although she is so nice that her personality always helps on visits like these.

During the incubation period in the dark room, there was enough light for me to read the paper a little, but that got tiring, so I amused myself by texting the photo above to some friends. One responded that I should think about how good my skin will look after the skin peels off, perfect timing for our high school reunion in May.

I wrote back that the procedure would also make me look 18 and do my hair for me.

If only.

Tuesday, February 14, 2012

Coffee klatch and coma-versary

My checkup at Dana-Farber yesterday went well, with my white count normal, hematocrit down a little but almost normal, and platelets still low (86) but good for me and not worrisome.

It was an interesting appointment. I had told Melissa about the return of the blister on my lip, and Dr. Marty, the infectious disease specialist, wanted to look at it. They had previously treated it with an increased dose of Valtrex, the anti-viral I have been taking since my transplant to prevent a return of CMV, a virus that I had a few times.

Turns out Dr. Marty was on rounds around the corner at Brigham and Women's. I said I could go over there and meet him, and she messaged that to him. He wrote back asking if we wanted coffee.  She wrote that she couldn't, but I could. Then all of a sudden he was writing to ask whether we wanted regular, cappuccino or latte...we both said cappuccino at the same time...and in a few minutes he arrived with three coffees from Au Bon Pain.

It is pretty nice to sit in an exam room having coffee with your caregivers.

Meanwhile, Melissa called in a request for a kit to take a swab from my lip. Dr. Marty looked at it and agreed that it looked a virus but also wondered if there was a connection to the other spots on my face, and then Dr. Alyea arrived and wondered if some of those spots might be mild Graft vs. Host Disease.

I told Dr. Alyea of my tennis loss and pummelling from the day before. It had already turned into a funny story; he laughed and said, "I think you're doing great!"

Today Melissa called me with the results from the swab: It turns out I have shingles on my lip. No wonder it hurts so much. They are going to increase the Valtrex again, and Dr. Marty wants to see me in a couple of days for more blood work and to look at it again. Sigh.

I stayed over at Diane's last night. We went to yoga this morning and then I drove about half an hour north to meet with a prospective client about some freelance writing work. It went well, and I think it will turn into something.

This morning Diane reminded me that three years ago today, I went into a coma.

"And here you are going to yoga and to a job interview and doing so well," she said.

I looked it up on my blog and read about those scary weeks when I lost consciousness and developed so many problems they thought I might not make it.

It's intense stuff. The description that Diane wrote is pretty long, but I'm providing a link in case anyone wants to skim it.

Sunday, February 12, 2012

Getting roughed up at tennis

My partner and I had a good tennis match today, but still, I left feeling beat up, and not because we ended up losing.

In the first set, one of the other players hit me really hard in the throat. Perhaps years ago in my more nimble days I might have been able to dodge it, but it came at me so fast I don't think I could have done anything.

We all went off the court and I eventually caught my breath. I applied a cold water bottle and felt better. She apologized, and I know she didn't mean it, but still, it's hard not to feel miffed.

"It's not hockey," I was thinking. "You are not supposed to hit the other player."

Plus, after getting hit like that, an alarm sounds in my brain: "Platelets, platelets, platelets!" They are not dangerously low, but they are low enough that I did worry.

We went back out and during the changeover, I noticed that my finger was bleeding. I don't know how that happened, but my partner, Wendy, found me a bandaid and we went back out. We played well and had fun, getting to 6-6 from a 4-1 deficit but losing in a tie-breaker.

In the second set, the same player hit me really hard again, this time in the groin. I think that if I were a guy, a would have been rolling around on the ground.

"I'm not going to ice this one!" I shouted over the net, trying to make light of it.

But actually I was not very happy and not feeling very well. I should have taken a break, but I just wanted to keep playing, which we did, going ahead to lose.

Afterwards, Wendy and I had to laugh about it. I was sitting on a chair court-side while we gathered our stuff, and while laughing, I leaned back so hard I hit my head against the wall. We laughed some more, and I hobbled off the court.

More than anything, my head hurt. I am not allowed to take Advil, so I popped some Tylenol, which don't work as well. The things that did help were the brownies and chocolate-covered pretzels that the other team, which was hosting, had brought. After the hard-hitter with the bad aim had left, the other captain said she definitely hits some wild shots. So I also felt better in knowing it wasn't my dodging skills that were to blame for getting hit.

After tennis, I went to Meryl's for dinner, where good conversation, good lasagna and good wine helped.

Still, I have to say I am smarting.

Tomorrow I have my Dana-Farber checkup. I hope that by then, it will have just turned into a funny story.

Wednesday, February 8, 2012

Breaking up is hard to do

Carpenters Doug Rondeau, left, and Wayne Gilbert
 enjoy lunch with Wade Boggs.
Boggs hangs out
in the garage.
Well, the larger-than-life cutout of Wade Boggs was already broken, but it was still hard to break up with him this week.

Cardboard Wade came into our lives about a year before his last season with the Red Sox. Jim and I had taken Ben to a Red Sox game and couldn't resist his pleas to take the third baseman home with him.

I came home from work on Jan. 4, 1993 and found 7-year-old Ben crying behind his bedroom door. I couldn't figure out what was wrong, but I knew it was bad, and I was kind of worried. I finally got it out of him: Boggs had signed with the arch rival Yankees. Although he would later sign on to the motto "There is no crying in baseball," who could blame him? This was a big deal.

Still, Wade stayed on in Ben's room. I knew he was there, but sometimes when I walked by at night I jumped.

Then the cutout's head began to droop, like he was perpetually sleeping, and finally somebody tossed him into Ben's big walk-in closet, which became the dumping ground for all sorts of stuff.

Last week I started a big cleanup in Ben's room, and he followed this weekend with five hours of sorting, tossing and keeping. He decided, alas, to throw cardboard Wade out.

I had a little trouble with this, partly out of sentimentality and partly because it's hard to throw out something that looks so lifelike. It reminded me of the years that the kids and I lovingly made life-size scarecrows and sat the smiling fellows on our porch bench. It took forever for us to put them out with the trash; we waited until they were so waterlogged that they were just too pathetic to keep.

I have pretty good luck putting things down by the curb; we're on a busy road, and usually people take whatever I've put out there. I taped up Wade's head and laid him against a tree, but there were no takers, so I dragged him back to the garage.

The carpenters were there working on our garage, and they shared their lunch break with Wade by propping him against my car.

I was just about to throw cardboard Wade into the carpenters' dump truck when I got a call from our neighbor saying he had seen the cutout down by the road and wondering if I still had it. Apparently he knows someone who loves these things and would appreciate having his photo taken with our Wade.

I told the neighbor that Wade was all his. The carpenters said they would put him in the garage to keep him dry.

When I looked around the other day, I found him hanging from the rafters.

So my neighbor will come to take him down, and cardboard Wade will "live" another day.

I just hope he keeps his head up.

Friday, February 3, 2012

The end of an era

Well, the era was over long ago, but seeing the basketball hoop lying on its side like this made me realize that soon this connection to a time period will be gone.

The October storm roughed up an already damaged hoop that still I kept around. The winds also sent huge limbs crashing into our garage, with one falling through the roof and another taking a gash out of the front. The carpenter has been busy fixing other roofs, and when he finally started work today, he put the basketball hoop on its side in preparation for taking it away.

It's actually our second hoop. Jim dug a hole and cemented the first one into the ground when the kids were little. They spent a lot of time out there shooting and playing games with their friends. Sometimes I went out and just shot around. I also played with them, first the game called Horse and then actual dribbling and shooting for points.

I had (and I suppose still have) pretty good aim and a certain amount of totally underdeveloped skill. Back in high school before Title IX, Miss Benson coached us in the games we played against other high schools, with two forwards on one side, guards on the other, and only two rovers allowed to run back and forth. I always wanted to be a rover. I don't remember getting much instruction.

At Vassar, I was briefly on the basketball team, where most of the other players had actually been taught how to play. Mostly, I warmed the bench.

So in the driveway, the kids had to listen to me say over and over in my best Marlon Brando voice, "I could have been a contender!" When they guarded me, I drove them crazy by pulling two hands back and getting the ball in by popping it over their heads. As soon as Ben got taller than I was, I was finished.

The beginning of the end for Hoop #1 came when Jim weakened it by backing into it.

The kids still managed to play with it on a slight slant, but then I finished it off by backing into it myself.

I was the only one who wanted another hoop.

"A house like this needs a basketball hoop," I said.

So Jim and Joe went out and bought a weighted one that they did not weight heavily enough, and in the first storm in fell down.

They fixed the problem, but when another wind blew, it crashed onto Joe's car and broke the windshield.
This is one of Joe's favorite "I told you so stories."

But still, I stalled in getting rid of it, just like I did with the backyard swing set that was actually beginning to rot when I had it cut down and carted away last year.

I kept it partly out of sentimentality and also partly because it had become so much a part of the backyard landscape that I kind of forgot about it...until the day that the guy who was going to plant grass seed back there said he would only do it if I got rid of that thing.

When Katie came home from college after the deed was done, she looked out the kitchen window and gasped, "My childhood is gone!"

I guess that's why I held on to these things: Because they were such a big connection to their childhood.

Of course their childhood isn't "gone." There are a million little reminders around the house, plus there are, of course, the memories.