Thoughts on being a (sort of) eleven year old

Toasting my donor 

We tend to like the number one, because it is the first of something, and after that, we like round numbers. We celebrate the fifth anniversary of something or the 10^th. At the paper, if someone sent in a press release about the “first annual” such and such, it was one of my pet peeves. I would change it to the first, because how did they know if it was annual yet?

The first anniversary of my stem cell transplant (s) was big. My first re-birthday. I did it twice. (For the other two out of four transplants, I didn’t make it past six months.) I had made it a year! Most restrictions were lifted. I could go places, eat strawberries, sit inside a restaurant. 

Even though two isn’t the round number favored in journalism circles, it’s a big one in stem cell transplant world. It’s when the cancer is unlikely to return. I didn’t make a big deal out of two years, not wanting to jinx myself. I did it twice. I think I might have had coffee with friends. 

Five years was the big deal. It was when I could say I was cured. (Though I never would actually say it myself.) My words: “They say I’m cured.” Doctors don't always say it this way, preferring to maybe cover their bases with “You’re no more likely to get leukemia than the rest of the population. "All the kids were around. We went out to Mulino’s, a favorite restaurant in Northampton, for a celebration complete with birthday cake and the number five. The waitress sang along. Maybe she wondered about the number five, maybe she didn’t even notice. 

A photo popped up on Facebook last month of my seventh “re-birthday,” showing my memory from four years ago of having a cake with Ben and Joe. I assume Katie was in Minnesota. I think we’ve done something on or around the date every year. 

Seventh re-birthday with Ben and Joe

Ten years was obviously super big. I don’t remember what we did, but we did something. Eleven, well, what can I say? It kind of slipped through the cracks.

A few weeks ago I thought about the approach of the 11^th one. The date: January 30^th. For a while we thought it was the 31^st, but Denise, my donor, set the record straight. She should know. We were all in a fog, so being off by a day is understandable. 

Then came the date, Jan. 30^th, 2020. My 11^th re-birthday. I got an email from Denise, with the subject line, Happy Re-birthday, and reading, “I can’t believe it’s been 11 years.  Here’s to many more!” 

It was strange to not have a plan. 

But wait, I did have a plan, just not a plan with the kids.

My friend Diane and I had a coffee date at Barnes and Noble. That’s where we frequently meet. We sat next to each other at my first job at a daily newspaper, at the Transcript-Telegram, aka the T-T, in Holyoke, and then again at the Union-News/Sunday Republican, which morphed into The Republican. We are sisters of the newspaper world. So in a way I was seeing a relative.

Our birthdays are close to each other, mine in August and hers in September. We had already bought each other our birthday coffee. But when we went up to get our coffee, I said to the barista, “It’s my birthday!”

I wasn’t fishing for a free coffee. I just felt like saying it.

Diane said she already bought me my birthday coffee. I explained that it was my stem cell birthday.

“Well, that’s better,” she said. She got me my “re-birthday” coffee. I bought my own chocolate chip cookie.

She had already left when I realized it would be nice to get a photo. A bookstore staffer said she would be happy to do it. I mentioned the occasion and she said she was on the (bone marrow donor) registry but hadn’t been asked to donate. I thanked her and said you never know when a match might come up. 

I took a deep dive and read my post from Jan. 31, 2009, headlined, “New stem cells signed, sealed, delivered.” I can still picture the wild ride I had in the little room. After I got the cells, I reacted, like so: “I started shaking vigorously, and my heart rate went up. Helen gave me 25 mg. of Demerol, which didn’t stop the shakes. She paged a doctor who came in quickly. I got another dose of Demerol, more Benadryl, hydrocortisone and some Tylenol. Also they put me on oxygen.”

The night before, when I had gotten anxious, I wrote that Diane reminded me,“ You’re getting another shot at a whole new life. It’s great. It’s the miracle of modern science.” 

And she was right.

Last week when I told someone about the occasion, I said, "I'm 11 years old and a walking side effect!"

A couple of things to note.

1. I'm walking, which is more than I could say for a couple of months in bed, in the hospital, after that transplant.

2. After everything I've been through, the four stem cell transplants, the graft vs. host disease, the neuropathy, the 13 teeth lost, and the skin cancer that is partially a result of the treatment, I still have my sense of humor. Actually my sense of humor may even be better, because I need it.

In a funk after flu shot, and trying to run through it

On Monday I went to CVS and got a flu shot. I figured that by the time I made a doctors' appointment, I might get the flu.

Since I've been poked and prodded countless times, you'd think that I'd be tough. I didn't get hysterical or anything. But I did get a little whiny. I said it hurt.

"Well,  it should, I just put a hole in your arm," the nurse said.

I asked the usual question – would I get sick – and she said that since it is a dead virus, I would not.

Since I like to do things differently, yesterday I felt sick. And my arm hurt. Waaaaaa.

I had promised Maddie a walk. We went to the bank. She lay down on the floor and made herself comfortable. The teller came around and gave her a dog biscuit. My ATM card was not working, so I went to her cubicle and sat down while she made me a new one. Maddie came over and sat with me. I looked at the photo of the teller's dog. It was a Shih Tzu.

I told her about the time when I brought my dog Simon to live in Greenfield at my Aunt Marge's house while I looked for a place to stay. I had gotten my first real newspaper job, at the Transcript-Telegram in nearby Holyoke, before I graduated from Boston University's journalism master's program. (Thank you Jon Klarfeld.)

Simon was possessive about his food. The little dog came over to investigate. Simon snapped. And, unintentionally but still not a pretty picture, broke the little dog's jaw. I felt terrible, of course, but luckily the dog was OK. It's a good thing that everyone loved Simon. I got to stay until I got an apartment in Florence.

Ah, memories.

In any case, yesterday, still not feeling great, I walked Maddie around the lake. When I came back, I looked out the door and thought about how in the way-back-past, if I felt slightly under the weather I could get rid of it by going out for a run.

I wanted to be able to do that. My legs felt heavy, and a stood for a while, looking out the window. I put my leg up on the counter and stretched. (Actually, I my hand ASSISTED my leg in getting up onto the counter. ) It could have gone either way. But I went out for the so-called run, back to the lake, which is about a mile around.

My run was about the same speed as my walk. I bumped into a friend and walked a little way with her. I said that if I wanted to get back to the point where a run was a cure-all, I would have to push through the first part, which was always the hard part. I've done it a few times but not consistently enough. Tennis is easier.

Thinking about this, I wondered, enough for what?

Not enough to get the runner's high, but enough to be a lot more than back after my last transplant when I couldn't even turn myself over or get out of bed.

A little perspective helps.

In any case, my phone said that by the end of the day, between getting to the bank, to and from the lake, and around it twice, I had done, or rather trudged, five miles.

I almost called it quits but I went to Northampton to Megan's yin yoga. It is a hassle to get there and not the best time for me – 6 p.m. – but it always calms me down.

Stupid statement, sad state of affairs (in news biz)

Stupid question of the year: "When was it that you didn't feel OK?"

Person who asked: nurse manager at internist's office, after I told her for the second time that I did not need a monthly check-in call because a lot of people were already following me, but she had someone from her office call me anyway.

My answer to when I didn't feel OK, after a Pinteresque pause: "In 2003, when Dr. B diagnosed me with leukemia, and after I had four bone marrow transplants."

(He didn't diagnose me personally, but rather sent me to the hematologist who performed the definitive bone marrow biopsy.)

To back up, at my last checkup, the nurse manager (or maybe practice manager) said she wanted to talk to me afterwards. My doctor said it had to do with Medicare rules for following high-risk patients. He said it would have made more sense when I was sick, as opposed to now, when I am (mostly) well.

When we met, she asked if I needed anything, and would it be helpful for her to call me once a month. I said I had so many people following me, and so many appointments to juggle, that it would be detrimental to add one more thing.

She said she understood.

Then I got the call anyway. I don't know why I find this so annoying, except that the tone and approach was patronizing, as though I don't know what's good for me.

It occurred to me that I could join the ranks of People Who Do Not Call Back. But I called back in case there was a problem with my insurance or something like that.

No, it was just that check-in call. I said it was odd that nobody called the whole time I was sick, hence her question about when it was that I didn't feel well.

READ THE CHART!

No, I didn't really say that.

What I DO have to do is get my ECP, the light therapy, changed. It is scheduled for Wednesday, July 4th, when the only sunburning will be to the outside of peoples' skin (not mine) as opposed to internally, which is what happens in ECP.

I said I would go in Tuesday, tomorrow, then realized it was crazy and called to change it but didn't get a response so I'll have to email. I'll either add an extra week to keep on the same schedule without missing too much, or just skip to my next appointment.

I've been finding a little joy in pinching my thigh and feeling a little loose skin. This could be a sign of progress, a further loosening of my skin, which for a while, hasn't had any "give."

Like many who started their journalism careers at small papers, I have been thinking a lot about the
shooting at the Capital Gazette. Memorial services began today for the five victims, who were hardworking journalists, like many I have known, just doing their job.

I was driving when I heard the news. It took a minute for Baltimore to register. Then I thought, that's where my friend Greg is a copy editor now. I pulled over and made a call and found out that he is at the sister paper, the Baltimore Sun. He worked with those who were killed. He wrote eloquently on Facebook about the loss.

I came out of a similar place – The Transcript-Telegram, or T-T – where dedicated reporters and editors put out a good little paper, and, as far as I know, would never have expected a gunman to burst in and commit a horrific crime. I can still picture the newsroom layout – open and accessible to anyone who walked in – and can still hear the clack clack clack of actual typewriters, the ringing of the alarm on the wire machine when an important story came over, the crumpling of paper when a reporter was unhappy with a story and ripped the typewriter paper out. And of course I'll never forget the trip down to the K-Mart Plaza after work to a hole-in-the-wall bar where we had a few (or more than a few) beers and talked into all hours of the night about the old-time newspaper characters.

Not too long ago, when I ran into a public official who I hadn't seen for a while, and he asked, "Are you still an enemy of the people?"

It was a joke, of course, but Donald Trump's "enemy of the people" description of the press has led to such a toxic atmosphere for journalists that, although you can't prove it, you could imagine being fuel to the fire of the Gazette shooter's rage over some stories that it ran about him.

This rhetoric has led to journalists being shoved, mocked, and threatened. Jeremy Peters, the New York Times Washington correspondent, said on Morning Joe today that some Trump supporters walk up to him and say that his stories are "fake news." Not as shocking as a shooting but it is seriously dismaying.

It's important to step back, with memorial services having started today, and honor those who died and those determined, heroically, to put out the paper.

Greg and I had such a serious conversation about all this that I felt like ending with a funny remembrance on the theme of getting the paper out.

I was a an arts and lifestyle reporter at The Republican at the time of a huge snowstorm. The plow was taking forever to come. The managing editor wanted me to get into work. I said I couldn't get out. (As I told Greg the story, I said Matt instead of Wayne, transposing T-T and Republican editors, then corrected myself.) Mimi passed along the message that Wayne was serious about me getting into work. I got in the car, put it in gear, and tried to plow through the snow. The car got stuck. I tried unsuccessfully to dig out. Wayne thought maybe I could take a cab. There were no cabs.

Finally, late in the afternoon, the plow came. I went into work, got there around 5, touched base, and went back home a couple of hours later. I didn't accomplish anything, but I did show up.

When you fall in love with your editor

Back in the day

When I tell people I fell in love with my husband-to-be’s editing back at my first newspaper job at the old Transcript-Telegram, they think it’s a joke. Well it’s a kinda sorta joke.

I tell them I loved what he did with my words. I say it in a funny voice so they know it’s a joke. But partially true. Because in any area where you wish to excel, there can be some falling in love with the person you emulate. By that measure you can fall in love with a lot of people who are experts at the things you want to do better. Tennis coaches, yoga teachers, etc. Of course you’re not going to MARRY them all or want to marry them, though I did it in this particular case, resulting in three fabulous children.

There is nothing better for a writer than to have an editor who knows how to ask the right questions, how to make you delve a little deeper and find that extra nuance while at the same time making sure you resist the temptation to over explain and indulge in long-windedness. Like I really just did in that sentence, using over explain and long winded, which mean the same thing, but since this is a blog post I’m going to indulge.

I bring this up because I had the best experience working with Rebecca Hudson, the espnW editor for my essay about how tennis helped me recover from leukemia. When I wrote that I loved tennis, she asked me to delve deeper into why I love tennis. I really had to think about it.

It’s not always easy to explain why you like or dislike something.

When I reviewed plays, I sometimes wished I could say, “I liked it,” or, “It was boring,” or “It was a lot of fun.” Of course that would leave a lot of blank space. I had to explain why I thought this or that. A good way to go about it was to look at all the details — the setting, the costumes, the performers’ mannerisms ­, inflections ­— and describe them. In doing so I would give a picture of the play so that readers could see it for themselves and wouldn’t have to judge based on my opinion. And in describing the play, I would feel my own opinion begin to emerge.

So what about tennis do I love? The memories of my father at Atlantic Beach, but also the feeling that you get when you hit the sweet spot. I had gotten the memory part but had to dig deeper for the feeling the ball on the racquet part. Golfers probably feel the same way, or anyone else getting the passing perfect moment in a sport.

Becky also was great because as we went back and forth on it many times, she accepted my changes and suggested hers with good humor. I had to cover a lot of ground, starting with my AML diagnosis in 2003 up until today through the lens of tennis. At first it was way too long, so she suggested cutting out the early part by linking to my New York Times essay. I lived the writing of the Espn story for a couple of months in between doing other things. Occasionally I woke up in the middle of the night or early in the morning with something I needed to add or change, and she was always right there with me.

People have written about the interesting difference in tone when you text with varying punctuation, and the same applies for emails. For example, OK! means great; while OK (no punctuation) sounds either neutral or wishy-washy and OK. (period) Sounds angry.

My kids used to tell me when I started texting that I sounded angry all the time because I never used an exclamation point!

Even though most of us don’t use exclamation points in our formal writing, using them in texts and emails can be a good thing. I bring this up because Becky used them a lot when I sent her new versions, responding with OK! Or Got it! So I didn’t feel like she was angry or annoyed with a gazillion edits!

Adventures in dreamland and in reality

Some adventures:

Exercising: The other day Maddie and I inadvertently went for a run when we ran into our runner friend Ellen and a friend of hers who had hiked the whole Appalachian Trail. We joined up with them while they finished their walk, but I didn't want to hold them up (as some people know I've gotten kinda slow) so for every one step they took, I jogged a few to keep up...sort of how I walk with Ben.

We ended up at Ellen and Mike's house, where luckily I got a glass of water and a ride back.

Looking out Ozawa Hall

Music: I went with Ken Ross to the opening of the Festival of Contemporary Music at Tanglewood. I couldn't make much sense of it but after reading Ken's review I understood it better. He was kind enough to put up with me whispering, "Are we going to get some melody next?" He smiled and shook his head no. Despite the mosquitos, it was fun to go and sit in the beautiful Ozawa Hall and look inside and out. Always great to do things with friends from the newspaper biz because you never run out of things to talk about.

Inside Ozawa Hall

Speaking of the newspaper business: I walked into Thornes Marketplace in Northampton the other day and bumped into an old friend from the Transcript-Telegram, Diana Carter, who had bumped into another friend from the T-T, Barry Werth, and his wife, Kathy Goos. I walked over and said, "Is this a T-T reunion?" Barry said that at any minute, Greg Pearson might walk in.

We fell right into an easy conversation as though no time had passed. By the way, when I say "old" in these instances, I mean old as in length of friendship and not as in years!

Dreamland meets reality: I dreamt that I was walking down a street and saw Patty Rosenfield, a friend from Atlantic Beach, and gave her a big hug. Then we saw her brother Tommy walking down the street and called him over for a group hug. The next day I learned that their father had died.

Recurring dream: I dreamt that my mother told me she was going on a long trip to faraway countries and wouldn't be able to call me. I told her I was really upset and actually angry because I needed to hear from her. She said I had grown too attached to her, like she had done with her own mother, and she wanted to help me get some distance. I said it was too late for that and woke up feeling sad.

Feeling pathetic, taking action: Yesterday I had that bereft feeling of wondering where everyone went. Parents departed from the earth, children departed from the area. I called Carolyn and said hello from a person who was feeling lonely and wondering if anything was going on. She said come on down for hotdogs. So I picked up some corn and tomatoes, put Maddie in the car and went on down to Springfield for a cookout with good friends and good conversation for me and two dogs for Maddie: the famous Theo and an adorable golden doodle puppy who Carolyn and Chip are babysitting.

Maddie enjoyed playing tug-of-war with the puppy and even let him climb all over her. They put him in the crate and she went over to see where her little friend had gone. I enjoyed talking to like-minded friends and went back home no longer feeling sad.

Saint Patrick's race day memories

Happy runner, 1980

The Saint Patrick's Road Race, held yesterday, brings back intense memories.

One of my parents took the photo at right as I finished the race in 1980. I don't look much worse for the wear after running the course when it was longer, about eight miles, going up and down the hills at Holyoke Community College. A bunch of us at the Transcript-Telegram would run up and down those hills after work. I didn't have many cares except for starting my career in journalism and catching the eye of the editor who I would later marry.

My time was pretty good, I think about 54 minutes when the course was reduced to a 10K. By that time I was at the Sunday Republican, talking to my runner friends the next day about how I could have run faster if I tried. They said that if I ran speed intervals I really could do it. One of them said jokingly (I think) that I was a wuss. Or something friendly like that. I did occasionally pick it up between trees or other markers on the road and sometimes on the treadmill got to eight minute miles, but that was about it for me.  Now if you ran or even walked with me you probably could not believe I was ever that fast.

 Here is the link to the essay that I wrote for the New York Times magazine's Lives page after my fatigue and slower time during the 2003 race led to my leukemia diagnosis. The other photo is of me at the Quabbin Reservoir when I got out on a break from chemotherapy and just wanted to be near the water. My mother took the photo. I must have been cold because I had two sweatshirts on. I look at both of those photos and can't believe either of them was me. After the little outing at home, it was back to the hospital and on to the rest of the story.

Showing off my bald head, 2003

As people who know me know, I have run the race many times since. I have the energy to run it again. I know because I played two hours of tennis Friday night and could have played more except for my toe starting to hurt and the sight of the pizza calling to me.

Just as I was incredibly frustrated by plantar fasciitis, now I am frustrated by one big toe that hurts after I run. People who know me also know that I never complained about leukemia but complained, and continue to complain, about my feet. I think I could ease back into it in my new Hokas, but as of yesterday I was not ready to try it.

I was sorry when I went down to watch Ben that I wasn't doing it. I have mixed feelings about being there. But I wanted to see Ben and be in the mix of it. Well, I parked my car so far away that I walked about a mile to get to the start. When I walked to the finish I was on the wrong side and had to walk all the way around to get to the side where I could see the finishers. I stood there with my camera ready, stood there for about half an hour, and then realized I had missed him. With thousands of people milling around, I decided I would never find him or Joe.

So I walked down to Canal Street. And realized that a nightmare of mine had come true. In my nightmare, I'm walking, usually around New York, and am unable to find my car. There I was in Holyoke and I couldn't remember where I parked my car. I thought I might have to flag down a police cruiser to drive me around. I didn't write it down because I thought I would remember it.

Then I played a memory game. I remembered it was the last name of a woman with whom I had recently connected on Facebook. And then it came to me. Wendy Bower. It was Bower Street.

I was sad that I couldn't run the race, but happy that I found the car.

I treated myself to a Coke to wash down the hotdog that I had bought, drove home, and thought about something else. I was glad to talk to Ben later and find out that he had a good run.

Writing more, and feeling good about it

Five years ago, I was so wobbly of mind and body that I wondered if I would ever be able to do anything again.

I've written a lot about the physical aspects of coming back, but not so much the work-related.

I wanted to keep writing, but I was out of a job, my clips were old, and my resume needed freshing up. Just working on the resume was an ordeal, as was trying to figure out how to refashion myself as a freelancer. My friend at Dana-Farber, Saul Wisnia, gave me the opportunity to write a piece for Dana-Farber's "Paths of Progress." He connected me with a freelancer who had worked at Dana-Farber, and she told me to reach out to all my contacts. It seemed an overwhelming task, but at least I had one new clip.

I got one story to write, and then another and another. I still didn't have a full plate and wanted to do more with my time, so I started volunteering at The Literacy Project teaching ESL to adults. Just recently I felt like I could do more (it may sound like I play tennis all the time, but I really don't) so I started researching other volunteer opportunities.

Around that time, I was asked to fill in temporarily in Mount Holyoke's communications department, writing three stories each week for the news and events section on their website. This was right up my alley! I have been doing it for a few weeks; I get the assignments on Monday and they are due on Thursday.

It has been going really well, and it feels good to have gotten a mental tuneup. I am not used to that intensity of work, so the first week it ran through my mind at night. But I got it back quickly. When I got my first newspaper job at the old Transcript-Telegram, the deadline pressure made me feel sick. But I got used to it, and now the ability to write fast and focused is serving me well.

Bites from the past

     Above, granola and the newspaper make a nice start to 

         the day. Below, Margaret gathers some of the ingredients.

When I moved to Western Massachusetts for a job at the former Transcript-Telegram in 1979, I lived in a funky apartment in Northampton. The paper, in Holyoke, Mass., was a good little daily. The place was lively, filled with smart, mostly young reporters and editors who worked (and played) hard. This was in the days of typewriters, and at deadline, there was a cacophony of reporters banging on keys and ripping out pieces of paper. There was a rush for the one OCR (optical character reader) where you had to feed in your stories and then a rush for the couple of computer terminals where you needed to read your story before passing it on to an editor. 

But the reason for this post is not to wax nostalgic about the good old days of journalism – we did have our fun – but to talk about a connection to this era: granola.

The funky apartment fit my tastes nicely. The landlord had never gotten around to putting doors on the kitchen cabinets, but I kind of liked that unfinished look. It was in that kitchen that I grew bean sprouts in a  jar on the windowsill and made my own granola. I can't remember where the recipe came from.

I met my friend Margaret at the paper, and we formed a lifelong friendship even though we didn't work together very long. We were both there for only a couple of years before going to bigger newspapers, but it was so intense it seemed like much longer.

This winter, when I was in the hospital waiting for my transplant, Margaret was going through some recipes when she found the one for granola (recipe below). She hadn't made it in over 30 years, but she made a batch and brought me a jar. It was delicious! (Ah, and yes, it brought remembrances of things past.) Not too long ago, I called her house and got her husband, Nick, who said Margaret was busy "making Ronni's Granola." I got all excited and thought she was making me another jar, but really he was just using the name of the recipe. When I told her my misunderstanding, she did, of course, make me a jar which she brought to the infusion room one day when I was getting platelets. (She lives and works in the Boston area.)

Now that I have a little energy back, I've made it myself a couple of times. There was a gap in between both times, and after the second batch came out at around 11 p.m., I devoured a bedtime snack of granola and blueberries. 

On the health front, I went to the clinic Friday instead of my usual Monday, due to availability of platelets. My platelet count was 10. Well, at least it wasn't in the single digits. White count was stable, but hematocrit had dropped to a borderline 25-ish, after I was so happy it was 31 on Monday. I could have gotten blood Friday, but I actually feel OK, so I'm going to wait until next week. Katie drove home while I slept off the Benadryl. 

Here's the recipe for what we now call Ronni's and Margaret's Granola

6 cups old fashioned oats (not quick cook)

1 cup shredded coconut

1 cup wheat germ

1/4 cup shelled sunflower seeds

1/4 cup shelled pumpkin seeds

3/4 cup halved cashews or slivered almonds

1/2 cup sesame seeds

1/2 cup sesame cooking oil

1/2 cup honey or maple syrup

1/3 cup water

1 1/2 tsp. salt

1 1/2 tsp. vanilla

Mix liquids and salt over heat

Pour over dry stuff and stir thoroughly until coated

Spread out on two greased cookie sheets

Bake at 350 degrees for 1/2 hour; check frequently and turn at least once

Add 1 cup raisins or cranberries