Friday, December 12, 2014

Dana-Farber summary: happy

I know how far out I am, but to see it on Dr. Alyea's screen at Dana-Farber yesterday was something else: five years, 10 months, two weeks.

Younger than Maddie, but older than I ever thought I'd be.

My counts were excellent: white and red both normal, with my hematocrit as an all time high of 35. Platelets were good too: 140, which although lower than the normal range of 150-450, is excellent for me.

My liver enzymes are lower (which is good), so I get to decrease my prednisone to 1 mg. a day.

As he shook my hand to say good-bye, Dr. Alyea said something that I wrote down so I could remember the exact words: "There's no greater pleasure for us than to visit with you."

Music to my ears.

Then I was off to see Dr. Lin for a PDT follow-up. She was pleased, although she did zap a few spots that had resisted the light therapy.

She also told me the answer to a certain mystery. I had complained to friends that I thought my stomach was getting fat despite all my exercising and Pilates classes. But it is not fat after all, and it looks a little different. It is graft vs. host of the skin. Sorry, TMI, but I also have it on my thighs. Always something.

One treatment is more prednisone, but I definitely don't want to do that. Dr. Lin has prescribed a cream and a visit in a month to yet another specialist, a doctor who focuses on graft vs. host of the skin.

I never did get my eyes checked out for the graft vs. host that I have been treating with Restasis eye drops. My appointment was at 3:10. I think they must triple-book. Two hours later when there were people before me and I still had not been seen, I was so angry and frustrated that I up and left.

I will reschedule for an earlier time when they are not so backed up.

Wednesday, December 10, 2014

Check-up anxiety and cancer nightmares

As check-ups approach, nightmares unfold. Sometimes.

It's been a long time, so it happens less frequently.

Back in the period after each transplant, I often took an Ativan the night before so I could get some sleep. That never even crosses my mind. In fact, last night I slept like a log, waking up at 7:30, which is late for me these days.

I didn't get any formal exercise yesterday, but I think I got exhausted from running around in yesterday's deluge– from tutoring to errands to last-minute oil change that was overdue – and getting soaked because my little umbrella blew inside out.

My nightmare the other day makes sense in light of my friend Ann's death from squamous cell cancer:

I dreamt that my dermatologist removed and biopsied two likely squamous cell cancers from my arm. They were larger than the usual ones.

"I wish I could tell you I wasn't worried about these," she said.

Doom and gloom.

I have three appointments in two days, and one is with my dermatologist tomorrow. It is just to check on my skin after last month's face fry, or Photodynamic Therapy. It looked horrible at first, but now I think it looks pretty good, and I think she will be pleased.

Also tomorrow, I have my check-up with Dr. Alyea. I feel good so I am not worried, but there is always that split second of anxiety while you wait for your counts to come up on the screen.

Today I am going to Mass Eye and Ear to see the cornea specialist Dr. Reza Dana, who is monitoring my eyes for the low-level graft vs. host that I seem to have. I've been using Restasis eyedrops frequently during the day, so we'll see how that has been working.

Also today, I'm seeing my social worker, Mary Lou Hackett, which I do from time to time. I sent her the blog posts I wrote about the deaths of my friends, PJ and Ann. I think that when possible these things should be discussed with someone in the field of cancer survivorship. I don't know what I expect her to say, but I think that airing my feelings will help.

Tonight: sleepover at Diane and David's.

Friday, December 5, 2014

My basketball career, then and now

Me shooting hoops with the guys in Washington, D.C., in 1978.
One of my high school friends took the above picture of me when we were visiting our friend Emily in Washington, D.C. in 1978.

We were sitting in a park when I saw some guys playing basketball. I went on over and as you can see, shot around for a while. It was fun and they didn't seem to mind.

As I told my kids many years later when we played in our driveway, I coulda been someone if anyone paid attention to girls' basketball back in the day. I was on our high school team, but Miss Benson didn't teach us anything. We had two guards who stayed on one side, two forwards on the other, and rovers, which I always wanted to be, who could cover the whole court. And instead of having uniforms like the boys did, we wore silly pinnies.

There was more caché in being a cheerleader. I practiced one summer for tryouts, a day during which one older girl came over and pressed down hard on my head to get me into a fuller split. I never did make it all the way. Emily and I were thrilled to get our red and white pom-poms and uniforms but soon realized that actually being cheerleaders was anticlimactic. We were told that we performed like dead dogs and kicked off after just a few games.

On the basketball court, I had a decent shot and ease in running around but never learned how to move. When I made it onto the team at Vassar, I mostly warmed the bench.

Still, I kept playing after college, joining a Northampton recreation league team when I moved to Western Massachusetts. When Steeplejacks – sponsored by a restaurant in Sunderland ( no longer there) – disbanded after infighting outweighed fun, I played in Northampton with friends after work at the Transscript-Telegram.

I also went to the Y with my friend Greg Pearson to play basketball with the guys. At home, we had some fun in our driveway, although my unorthodox shot – arms raised overhead instead of one hand guiding – drove Ben and Joe crazy. They promised to put an end to that when they got tall enough to block me, which is what happened.

Play ceased upon the demise of our basketball hoop, which was cemented into the ground. It went crooked after Jim softened it up by backing into it, then I finished the job by backing into it again.

Cut to the present. The scene: The Holyoke Y, again. A group of guys usually plays basketball in the gym before the fitness classes that I take. The other night, as they were getting ready to leave, an urge came over me to see if, after years, I could still shoot.

It's a good thing my kids weren't there because they would have been SO embarrassed. I walked over and asked if I could borrow a basketball to take a few shots.

Well, I could not get my feet off the ground. Each shot was perfectly aimed, and the ball sailed...right under the basket. Probably thinking, "Crazy lady," the owner of the ball took a few shots to demonstrate. No luck.

I returned the ball, which frankly was dead, and went across the gym to where another ball with more air was lying. After a few more tries, I finally made a shot. Victory!

I jogged back to where they were packing up and said, "Hey you didn't see it but I made the shot!"

One of the guys smiled and said he had.

Probably thought, crazy old lady.

But I was happy. After all the serious things I have been through, I can still be a goofball.

Saturday, November 29, 2014

Rooting for UMass football (announcer)

I'm sorry if this sounds terribly un-American, but unless you count that I felt like I was at a football game while watching the TV series Friday Night Lights, I had never been to one until yesterday.

That's when Katie and I went to the UMass vs. Buffalo game, not so much to watch the action on the field as to hear Joe announce. Let me tell you it was a thrill a minute. I felt like turning around and telling spectators, "That's my son!"

It was the same way when I heard him announce a UMass hockey game. I was cheering more for him than for the players, and that time I crept down to behind the announcer's box and watched him do his reads. (And true confessions, I even took a picture in which I got mostly just the back of his head.)

Ben had come up from Fairfield yesterday to go the the football game with two friends, and then he slept over. This morning, the four of us had breakfast before everyone went their separate way.

I've seen parents of around my age writing this on Facebook over the holiday weekend and it is so true: It is nice to have a full house if only briefly.

Here is Joe's interview on UMass Sports Insider with senior linebacker Stanley Andre, an economics major (1:50 into the segment.)
I am kvelling!

Thursday, November 27, 2014


Joe, Meghan, Ben, Katie and me
Thankful for Denise, my donor, for making it possible to enjoy this wonderful Thanksgiving with my family.

Wednesday, November 26, 2014

Another loss

Ann Gregory
I was going to write about my running around since Friday: New York (Central Park, Chinatown, Broadway, the Museum of Modern Art), Providence, Boston (to pick up Katie), and finally home today.

I was also going to post some photos, but my heart is not in it, because today, I read this post from Ann Gregory's husband, Chris, on her blog, Ann's Fight: "At 9:30AM this morning my best friend, wife, lover and radiant bride took her last breath.  The light is gone from the world."

I have been following that fight since starting my blog in 2008. Like many readers who had never met her, I felt as though I knew her. Our struggles were similar: leukemia (hers was ALL, or Acute Lymphoblastic Leukemia), transplant, getting back to normal, relapse, Graft vs. Host Disease, prednisone...

Some years ago, it seemed like she would be OK. She and Chris were so happy when they bought their home. She planted a garden. Returned to school. Dreamt of having children.

PJ (Patricia) talked to Ann every Sunday. Because PJ lived near enough, we became real friends. We talked to Ann about coming East from her home in Baton Rouge, Louisiana. Or maybe, we thought, we could meet half way. Have a cup of coffee or tea. Support each other in person as we had done virtually. 

Ann and Chris called me when a squamous cell cancer was discovered on her tongue and had to be removed. They knew I had gone through something similar, and they wanted to talk before the surgery. Only mine was pre-cancerous, discovered early when I was getting a tooth pulled. (A real pain, getting 11 teeth removed. A stroke of luck.) I told them it was kind of weird to have a piece of your tongue scooped out but not too terrible.

It was for her, though, because that squamous cell carcinoma spread through her system and lead to her death at the way-too-young age of 40.

Her Facebook wall is filled with pictures of her young and healthy, and, even when she lost her hair after the last barrage of treatment, still with that radiant smile. Throughout, expressions of heartbreak.

Her friend Jody Schoger, who has been writing eloquently about her own cancer fight, said this:
"I'm grateful for the life of Ann Betts Gregory -- her light, a keen intelligence illuminated by such a generous and kind soul. She was funny, impish, loyal. She had more cancer in her adulthood than should be possible -- pure testament to her determination and strength."
Four of us had bonded through our leukemia blogs, three of us with AML.
Dori, who I knew through her husband Jim's blog Run for Dori; PJ on The Plog, Ann, and me.

Now there is only me.

Saturday, November 22, 2014

Catching up with friends from Friends

My friends from the Friends Seminary class of 1972 try to see each other as often as we can. We talk and we text. When the larger group got together at reunion, we shared so much history that it seemed like we barely missed a beat. I got reacquainted with Dan Green and Sabrina Hamilton when we all ended up living in Western Mass., and he was kind enough to create my website, that is invaluable for freelance writing. Same thing when we got together: Never missed a beat. I am so excited that in the next few days I will see two "old" friends who I haven't seen in ages. Tom Rosenfield is coming from Switzerland to visit relatives in New York, and I am going to meet up with him and some others tomorrow. Next week, Scott Miller will travel from West Virginia to Providence, R.I., also to see relatives, and since that is under two hours from me, I'm going to meet up with him there.

See if you can find me in our 11th grade class photo, top. In the bottom photo, it is easy to find me with my crazy hair. We are all holding our senior photos. I think Scott Miller is responsible for that one.

In any case, I'm heading down to New York today via my usual hop, skip and a jump, stopping in Fairfield, where Ben will take me to the Metro North.

Last time I wrote that I was heading to the Old Country – what some of us Jews call New York – my friends here with roots on the Emerald Isle thought I meant Ireland!

But it is actually my own old country, where I feel at home the moment I step into Grand Central Station.

My room looks like it has been hit by a hurricane because I tore it apart last night looking for something to wear out to dinner. Even though I know that the house you leave is the house to which you return and it is nice not to come back to a mess, I am going to shut the door and get on the road as soon as possible so I will have time to do my favorite run around the Central Park reservoir before having dinner with my cousins.

Tomorrow: Dim Sum in Chinatown, then a visit with my aunt Marge and Bill before coming back.