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.

Thursday, November 20, 2014

Never tidy up

Katie returned a call last night as I was lying in bed reading: 10:45 my time and an hour earlier in Minneapolis. This was fine because she knows I stay up that late and also because we cracked each other up, which was a good tonic for some (minor) things that are bothering me.

Basically I made her laugh which then made me laugh, and as we know laughter is a good kind of contagious.

The topic was my failure to find the big bag in which I put winter stuff last spring: mittens and gloves and hats and scarves. Usually these things stay in overflowing bins in the coat closet. I thought I was doing a good thing by bagging everything up for the summer. But I cannot find that bag anywhere. I had to break down in Northampton and buy a hat even though my favorite one is in that bag someplace. So is a beautiful chenille scarf of my mothers that I love to wear.

In telling Katie this, I said, "Never tidy up. You will never find anything again."

She thought it was hilarious advice from a mother who like most others always said, "Clean up your room!"

I said I meant tidy up as you go of course but never do something so major.

"Sorry," she said. "I already wrote it down."

It will now go in the book of "Momisms" along with my famous exhortation, while giving them the lecture about never getting in a car with a driver who is drunk, to "Never get in a car with anyone who drives!' which is not exactly what I meant.

Katie asked if I had looked in the Scary Closet. This is a closet in our dining room that runs deep under the stairs where it is too dark to see much. Things get tossed in there and then get lost and sometimes found. I bought my friend Margaret the perfect Life is Good T-shirt for her 60th birthday, then threw it in there but forgot so I had to buy her another one in a different color.

It was the little Jake character saying "I dig everything" with a picture of a trowel and flowers, perfect for Margaret because she likes to garden. Recently I benefited – or rather Margaret benefited – from a tidying up of that closet when I found the first one and gave it to her. There was so much stuff in there that as I sat on the floor tossing long-lost things onto the dining room floor, I was engulfed and not sure how to get out.

Another reason for it being the Scary Closet is that there is a crucifix hanging on the wall. Even though I am Jewish I am afraid to throw it out. I do not want to bring down any bad luck.

Speaking of superstition, I have just turned a glass upside down on the kitchen counter. A friend told me that this is the way to find lost objects. I am determined to have better results today.

Wednesday, November 19, 2014

Moving along

A funny thing happened on my way into the Holyoke YMCA's gym yesterday.

I was looking for the regular 45-minute exercise class but instead walked into a two-hour Fitness Marathon that was happening instead. Not knowing what was in store, I started to back out, but one of the friendly instructors told me to give it a try. She also said that of course I did not need to stay for the whole thing.

Well, I stayed for an hour and a quarter and discovered a couple of things. I can do cardio kickboxing even though I had told friends it was not for me. I can actually do multiple jumping jacks (although not doubles), which is an accomplishment considering that a while back when my friend Jo (personal trainer and nurse!) gave me a workout program and said to do jumping jacks, I couldn't even get my feet off the ground.

Knowing the value of not falling down, I marched in place when there was too much jumping around.

Today I rejoined the Wednesday tennis round robin and was happy to see everyone. A few of us talked about our aches and pains and then one of the women said, "Look at us!" My contribution to the conversation is that my toe still hurts, and the podiatrist's conclusion is that it is arthritis.

This is hard to treat because I am not allowed to take anti-inflammatories. A physical therapist is working on it. Also I bought  Triflora arthritis gel at Whole Foods. I don't know if this homeopathic gel will work, but I liked the looks of it.

A friend pointed out to me at tennis that after what I've been through, a painful toe is nothing.

This of course is true, but it is also true that I complained more loudly about my other foot problem – plantar fasciitis – than I ever complained about leukemia.

In any case I had three fun matches, each one basically tied, and I don't feel any worse for wear.

Sunday, November 16, 2014

Reality star's death strikes a nerve

From left: Alicia Quarles, Diem Brown, Kara DioGuardi
First thing yesterday morning, a tab slid onto my computer screen offering STORIES THAT MIGHT INTEREST YOU. The headline read, "Reality star Diem Brown dies after cancer battle."

These alerts are often annoying, but the genie in the computer guessed correctly that I would click on a story with the word cancer in it.

The story, from USA Today, was that Diem Brown, a star of MTV's Real World/Road Rules Challenge died Friday at 32 from ovarian cancer.

Brown had first been diagnosed with ovarian cancer at age 23, and it had returned twice, in 2006 and in 2012, and a third time earlier this year.

I had never heard of Diem Brown and had never watched any reality show let alone this one.  But I was still touched when I saw the photos of this beautiful woman and saw when she endured.

Brown had chronicled her fight in a blog for, becoming an advocate for cancer patients and founding MedGift, a support registry for those suffering from any illness.

Diem Brown
The charity provides a way for patients to create a gift registry so that loved ones can contribute money and time to help a patient cope with treatment or ease a financial burden. It also provides tools to create and promote support pages for people with cancer or any health-related need and has a space where readers can ask questions that are answered by a panel of experts.

On her blog, Brown wrote about her cancer treatments, her desire for a family and children, her fertility treatments, and about her struggles, fears and hopes. She competed in one competition just after finishing a round of treatment, taking off her wig.

In looking at why this resonated with me, I thought back to our Districts championships in August 2003, when I competed (and won) with my tennis partner Donna in between rounds of chemotherapy just before my first stem cell transplant. I asked her if I should keep my scarf on or show my bald head as a way to throw our opponents off balance. I think it was a joke. In any case I wore the scarf. (I never could deal with that wig.) Also I had pneumonia at the time but it was a fungal ball on my lung that was contained by a pill I was taking. Also after that I had to go almost straight back to the hospital to have that thing removed.

But anyway, back to where I was:

Unlike leukemia, which is curable, ovarian cancer is often fatal because it is difficult to detect until it is too late.

A story like this, in addition to making you feel terrible about a life ended so early, can send shivers up and down your spine. It is a reminder that you can do the right things health-wise and still get hit. (Example: Me.)

Still, I’m taking a moment to appreciate what this woman did by putting her energy into helping others rather than just talking the talk, putting herself out there in a popular venue such as People

(Certain people like myself might not admit to liking the magazine, but watch us go right for it in check-out lines, doctors offices and airports, and see us welcome it to leaf through when we’re not feeling well.)

She had good messages, such as:

"No matter what it is, you're going to have the bad days, but if you have hope throughout, you won, no matter what the results.”

Friday, November 14, 2014

Pointing to another weird problem

Most times recently when I've seen my friend Jo – Nurse Jo – I have a medical question or request.

Lately it has been taking out the stitches that I got when having squamous cell cancers removed. Last night, as were leaving her house after book club, I said I couldn't go without asking her something medical.

So I showed her the fingernail on my left pointer finger. The skin around it is red, inflamed and painful. She said it is definitely infected and I should call my doctor. I did that today and he is phoning in a prescription for the antibiotic levaquin. I am also supposed to soak it.

I was trying to figure out how this might have happened and I think maybe it was when I was pulling dead annuals out of the garden and cutting back perennials. Maybe I caught it on something prickly.

Is the moral of that story
(a) wear gloves,
(b) let it wait until spring, or
(c) get somebody else to do it?

My whole left axis is out of whack; the left big toe still hurts even after I got a cortisone shot. My podiatrist suggested wearing the boot when possible. The physical therapist who I am seeing for something else also worked on it.

Putting faith in the saying that laughter is the best medicine, I'm looking forward to attending Jokes for Jimmy, a Jimmy Fund event, tonight at the Log Cabin, featuring Mike O’Brien, Sean McCarthy, Tumbling Jack Walsh and Lenny Clarke.

Wednesday, November 12, 2014

After transplant, new relationships

Bubbe and baby
My donor is a new grandmother.

What does that make me?

Technically, of course, no relation, but it is interesting to contemplate the bonds generated after a bone marrow transplant.

It surprised me at first to learn that after transplant my blood type would change to Denise's, but then it did make sense. Out with the old, in with the new.

 It is a strange, and in this case, wonderful new world where two people previously unrelated now share something so vital as a common blood type.

We email from time to time and so I knew that she her son, Jordan, and daughter-in-law Kayla were expecting. But I didn't know the due date. On the the day last week that I wrote to ask for an update, baby Aviva Esther had arrived two days earlier.

Maybe we have a psychic connection as well.

Aviva Esther
I am happy for her like I would be for a friend.

But we are at the same time more than friends and less than friends.

It is a brain-twister.

Yet one thing's for sure: My mazel tov was heartfelt, and I loved looking at the pictures of that beautiful new life.

Sunday, November 9, 2014

No cell phone, no phone calls

My cell phone is dead, and although I have a land line, it hardly does me any good. Since I know very few numbers by heart, I won't be making many calls until I get it looked at tomorrow.

Tapping a name in your contacts list means never having to memorize a phone number.  Even if you tried, it would be hard to do since they are all just a meaningless string of numbers.

It makes me nostalgic for the days when phone numbers began with exchange names that made some sense.

The upper east side of Manhattan, where I lived, was ATwater 9, so we were AT9-8875. (Really 289, but we always used the letters.) After our parents finally gave in to our pestering over getting a "kids'" line, we added AT9-9089. My mother's jewelry store – Lynne's Speciality Shop at 1288 Lexington Ave. but just The Store to us – was AT9-6919.

I can still remember all or part of my high school friends' numbers.

Pam was (and is) Eldorado 5 -3182. Emily's began with ORegon 4 (OR4-6101). Nancy was SPring 7 (SP7-4961) and my old boyfriend was ALgonquin 4 something or other. (OK, I'll admit it, I still know the whole thing: AL4-2588.) The friends who lived in the Gramercy Park area had, of course, GR for Gramercy.

In a piece in The Huffington Post, Erica Jong wrote,  "When I first started making phone calls in the fifties, anyone could tell where a friend lived by the telephone exchange office in which actual telephone operators sat – like Lily Tomlin as her iconic comic character, Ernestine.

"My family was Endicott 2. We lived on the Upper West Side across from the Museum of Natural History... How mnemonic it was to have Audubon and Academy and Nightingale, Hunter 2 in Great Neck and Tremont 2 in the Bronx. There was Plaza 1, 2, 4 etc. and you could visualize your friend in Great Neck or the Bronx or the lower East Side – ORchard whatever for Orchard Street. Villagers were Spring 2. And my high school boyfriend was TRemont something. I am ashamed not to be able to remember the digit.

"Now New York City is full of people from ELsewhere who remember none of this because they were born in the Age of Numerals."

Almost to her dying day – even when she was sick in bed – my mother prided herself on being able to recite her whole address book.

I bet nobody could do that these days.

Friday, November 7, 2014

Please don't say you're a blast from the past

Certain words, or things, although benign in and of themselves, assume a second – and negative – meaning when associated with cancer.

For example, relapse, which is obvious. But also blast, which is not so clear.

This came to mind yesterday when I was thinking of how I had relapsed in my good intentions to do strength training. Even saying it to myself caused a shudder. Because, of course, relapse is what happened to me twice.

But what about blast?

"A blast from the past," a college friend wrote to me.

"I had a blast," people say.

Well, for me, blasts are what I do not want to see in my blood test results. Because blasts are the immature white blood cells in the bone marrow that spill out into the bloodstream of patients with leukemia, preventing the formation of normal blood cells.

When I look at my blood test results, I always want to see a zero after the word blasts. I don't remember what it was upon diagnosis, but it was high. Thankfully it has stayed at zero since that day that my donor, Denise, saved me : January 31, 2009.

For a while after that when the word "pending" came up on the printout after the word blasts, I waited on edge until all the results came in. Now I am more relaxed, but I am sure if you took my blood pressure while I was waiting for my results, it would be at least slightly elevated.

Then there is chicken pot pie. In a way you'd think I'd be grateful for it because it was a staple during my hospital stays when so many other things were unappetizing or just plain too hard to swallow. But I ate so much of it that I would be happy to never eat a chicken pot pie again. Actually the smell or sight of one can even make me queasy.

And another: Diane gave me a soft long-sleeved blue shirt from the Gap for wearing in the hospital during one of my stays. Afterwards, I wore it at home. I can remember wearing it on the night I went to the emergency room upon my relapse in December, 2008. It's nice and I don't want to give it away and sometimes when it's cold I like to wear it, but still.

Also, a thought I do not really like to entertain: What if I need to go in again and I have given away all of my hospital clothes?

These things are not intense like the sound of a gun shot would be for a war veteran suffering from full-blown PTSD. I can deal. It is fine. But associations are always around, reminding me that although thankfully it is gone, it never totally goes away.

Wednesday, November 5, 2014

First world problem, real world problem

It turns out that I actually did not have a stress fracture, although when I saw my podiatrist today he said it was a good thing that I wore the boot because I was probably on the way to getting one, and catching it early nipped it in the bud.

When I went for a little test run a few days ago, my big toe really hurt, though. Even when I wasn't moving, I got shooting pains in it. So today I asked for, and got, a cortisone shot.

Dr. Wolf said I need to ice it and baby it for a couple of days, after which I can get back to tennis. I said I was disappointed because I thought I could play tomorrow.

As I was leaving, I shrugged and said, "First world problem, I guess."

He got a kick out of that and said he had never heard it. I hadn't either until Katie told me about it being a popular topic on the internet. I think I am going to email him this link that explains it. The examples of first world problems contrasting with real world problems can really make you stop and think.

Changing the topic now from feet to face, here is an update on the natural progression after the PDT. As expected, my skin is peeling, and I have to admit it is difficult to stop myself from helping it along. Katie has caught me fussing with the things on my skin and has said, "MOM, stop doing that," and so I need to internalize my daughter and keep my hands off my face.

It reminds me of the bad old days of getting so sunburned that my skin would peel off in sheets, which I thought was really cool and also a sign that tanning in earnest could begin. In addition to sunbathing, I was also a lifeguard, and that added to my sun exposure.

You might not think it when you look at me now, but my skin is actually fair. It darkened after chemotherapy, a process known as hyperpigmentation. In the off-season when I haven't been outside in the sun, sometimes people wonder if I've gone on a vacation.

They ask, "Where did you get that tan?"

It would definitely be a conversation stopper to say that I got it in the hospital during chemotherapy, so I make up some fabulous island destination.

Only kidding. Mostly I just shrug my shoulders and say that I don't really know.

Sunday, November 2, 2014

Taking it easy

I put my yoga clothes on yesterday morning but I just couldn't make it; even though there are many worse things, having your face subjected to an intense 15-minute burn can take a lot out of you.

The pain had mostly subsided, but I still felt under the weather and like I had a low-grade fever. The couch looked more inviting than the yoga studio, so I took a nap instead. I took Maddie for a short walk, then read and sent out emails inquiring about new freelance jobs. That was about it.

Although I can hardly ever find any movies to watch on TV, I found  "Enough Said," with Julia Lewis-Dreyfus and James Gandolfini. It was a nice little romantic comedy but also sad.

The dedication, "For Jim," appears before the credits at the end of the film. It was the second-to-last film for Gandolfini, who died last year from a heart attack at age 51. Roger Ebert, also gone now, wrote, of the dedication, "It will likely turn a pleasant-enough comedy into a two-hanky weeper for many."

(Actually I really teared up at the scene in which the mother played by Lewis-Dreyfus bids a tearful farewell to her daughter, who is heading off to college for the first time. It seems like only yesterday that I was doing the same thing.)

Today despite almost being blown away by the wind, I did make it to Pilates and for a walk with Maddie. My face will probably be red for a week and then it will start to peel. I go back to Boston in a month for Dr. Lin to survey her handiwork.