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.

Running – or sloshing – in the rain for a good cause

With Amy Willard before the run

According to a post on the the Hot Chocolate Run's Facebook page, it was apparently the first rainy Hot Chocolate Run in the event's 15th year history.

In the morning, a friend pointed out that I didn't have to go. I had already raised the money, after all.

I said, in effect, that if everyone thought that way, nobody would be there. (And think of all that hot chocolate going to waste.)

When I ran the Hartford Half Marathon in the fall of 2002 it was on another rainy day. I felt a little under the weather. I remember my mother telling me not to go. I went anyway. At the time, leukemia might have been brewing. But I felt pretty good, except for feeling silly when my friend Mike and I got there and got soaked while waiting, while the more knowledgeable runners had made makeshift ponchos out of garbage bags that they discarded when the race began.

I didn't feel so good this year. And it was only a 5-K.

Contrary to last year, when I trained for the Hot Chocolate Run so that I would feel OK on the hills, and then wrote about it for Women's Running, I didn't train this year. 

I wasn't even planning on going, but when I told Marianne Winters,  the executive director of Safe Passage, that I wasn't in shape, she said that it didn't matter because the Fun Run, was, well, fun. In the old days I would have signed up for the race with the "real runners," but that was then, and this is now. 

I know Marianne through tennis, and it was over snacks at a tennis match that we had talked about my participating. It was as a way of supporting her great work that I did my first Hot Chocolate Run with other tennis teammates three years ago.

And then there was one.

Amy, from that original group, was running this year. We agreed to meet before. It was fun to go together. She has a great smile that ... cliché alert...brightened the day.

Due to the cold and rain, it was difficult to figure out to wear. I put in contacts that I'm trying out. The idea was to keep from having rain pour onto my glasses. I put on a Gore-tex jacket to keep my top dry, and as for my legs, I figured they would get soaked anyway so I just wore the leggings that I wear to tennis. Then for headgear, the choice was between keeping my head warm with the red hat that you get for raising at least $150, or wearing a baseball hat and keeping the rain out of my eyes. 

Choosing the warm hat may not have been the best idea. The rain was coming down so hard that I was afraid the contacts would wash out of my eyes. Then my vision would be even worse than it was in rain-soaked contacts.

At least as an upgrade from the garbage bags of yore, volunteers had handed out ponchos for us to wear while we waited. 

We also went into a warm tent where trainers from Cooley Dickinson Hospital were rolling out runners' legs with a stick that is a torture device for tight muscles. I got mine done because just on time for the run, my plantar fasciitis decided to act up. This irked me no end. I have a couple of the sticks at home. I guess I should have been torturing my calves for maintenance, but, alas, it's hard to get motivated when there are so many other things to think about. In any case, it helped a little.

As I was going up the hills, I remembered why I had decided to run on some hills before last year's run. I've been doing intermittent three-mile runs but they are mostly flat.

I leaned into the first hill. Then my back cramped, and after a while, I had trouble standing up straight. I thought maybe I should switch to a walk for a while. Other people were doing it. When I tried to switch gears, I wobbled a little. It was easier to run, albeit slowly, that to walk, because it gave me better forward momentum. A woman asked if I needed assistance. I thanked her and said I didn't. We trotted alongside each other for a bit. That took my mind off being uncomfortable...for a few minutes.

By the time the hills at Smith College came, near the end, I was feeling a little bit screwed. I was bent over. I tried to coax myself into standing up straight. I told myself, "Pretend you're walking the dog!" Down the home stretch, I was going slowly enough to have a conversation with two police officers near the Academy of Music. I said I couldn't stand up straight. They asked if I needed help. I said I just wanted sympathy. They laughed.

Obviously I made it. Hot chocolate with marshmallows never tasted so good. I was soaked and cold But so was everyone else. 

I got a new mug. 

If you contributed to my fundraising page, thank you!

I love how the website is set up so you can see where the money goes, for example, a $30 donation can help provide resources, support and hope for a survivor calling the 24-hour hotline; $60 can help support a survivor's first counseling session, and so on.

The event broke records and raised $628,527.

I don't seem to be any worse for the wear except for not being happy about my heel.

When dreams come true, it's kind of freaky

On Sunday night I dreamt three things.

1.     I was playing tennis, and my forehand would not go over the net. Someone said I had to get under it more. I tried, and got some, but not all, over.

2.     I bumped into a friend with whom I had had a fallout. He was walking towards the parking lot of The Republican. “Happy New Year!” I said. He looked back and said, “Same to you.”

3.     I had parked my car in the gated lot at work. When I went in to get it, I realized that I needed a key card to get out. I was afraid I would be stuck inside. But I waited a while until a car went out and I followed that driver, and the gate opened and I got out.

On Monday, these things happened.

1.     I was playing tennis, and my forehand kept going into the net. I told my doubles partner that this had happened in my dream, that I got under the ball, and it went over. I tried it. It got a little better.

2.     I went into Starbucks and bumped into the friend I had dreamt about. I told him I dreamt about him. He asked if it was bad. I said that no, I had just wished him Happy New Year. So in real life, I wished him Happy New Year. He wished the same to me.

3.      I parked in the garage in Northampton later that day and went to do some errands. When I got back to my car, I realized that I had lost the ticket. I went to the pay station and pressed the Lost Ticket button. I would have to pay $20.

I canceled the request and wandered around the garage, retracing my steps to try to figure out where the ticket had fallen out of my pocket. No luck. I walked out to see if I could get a new ticket, but it needed the weight of a car. By this time it was pretty late.

A young couple walked into the garage after paying for their “get out of the garage” ticket at the pay station. I asked what they thought would happen if I drove my car out after them. He said that probably the bar would come crashing down on my car. I got an idea. I asked if, for a few bucks, they would drive out and then drive back around to get a ticket and then back out and hand it to me. The guy said, sure. (I hope Dave Molnar isn’t reading this.)

They put their ticket receipt into the machine, drove out and around, got a new ticket and handed it to me. Success! We all smiled. I went to give him the dollar bills I had pulled out of my purse. He said that he wouldn’t take it for a favor. I thanked him and said that it would come back around, and someone would do a favor for him. We went our separate ways, smiles all around.

So….Last night I dreamt that I needed to go on a diet to lose five pounds. Does that mean I need to do it?

I am not overweight but I know the wishful thinking behind the dream. I am not happy with the way that mygraft vs. host disease of the skin has caused my stomach to stick out. It is more than being of a certain age. It has made some of my clothes unwearable and some just plain uncomfortable.  I know it’s a small price to pay, but that doesn’t make me like it any more. It has been described as feeling like there is a band around your stomach. It has to do with the fascia, the layer beneath the skin. Losing weight, alas, isn’t going to do anything for it. That is why I keep getting the ECP, or extracorporeal photopheresis, aka light therapy, aka sunburn of my blood, which has helped soften my skin and keep it from hardening more but alas has not done anything for the popping out thing.

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.

When complaining gets you nowhere

I might finally have to say goodbye to MART, the transportation authority that gives free rides to patients. In exchange for some good stories (another to come) and saving on gas, mileage and parking and fatigue in driving, I am not sure if it's worth it anymore, especially since I am now going every other Wednesday to get ECP, or extracorporeal photopheresis, the light treatment that has greatly improved the graft-vs-host disease that caused my skin to to thicken and harden.

If you are tired of hearing about this, you can STOP HERE.

If you want to hear about how I waited 45 minutes last night at Dana-Farber for the company to send a new driver from Springfield because the one who had taken me and who was supposed to pick me up disappeared, and how my new driver told me that he had five children with four different women and that he was a father at 14 because his then 19-year-old babysitter got pregnant after having sex with him since he was 8, and about how I called MART to complain for the third time and asked if that was enough to get a new service, and how the person said no, you have to complain several times, and how I said several is three, and how I called my efficient Turkish driver friend to see if I could get him back and how he said Westfield Transport is offering a lower bid, then you should continue.

If I get that company again I'll either drive myself and stay overnight at Margaret's or Diane's, or get a ride if someone wants to drive me and sit around or go someplace for the three hours. Actually it's fun at the Kraft Family Blood Donor Center. The nurses are nice and friendly, and there is a camaraderie among the patients (when they are not sleeping) and the people who sit with them. When I left yesterday, I was a little sad to be skipping a week. It shows how perceptions can change because when I first heard I had to do this, I was not happy about it.

Since I have the number for Westfield Transport, I might also call directly and tell the owner not to bother bidding for me because I'm not going to go if I get them again.

My driver taking me to Boston yesterday was half an hour late. Someone asked why I don't drive myself if they are late. Firstly, I think they're about to come. Secondly, my car was in the shop getting new brakes.

When he finally came, he said his boss had told him to pick someone up in Northampton at 12:30 and take that person to the doctor, and when he told his boss that he would never be able to get me at 12:45, his boss said he didn't care. He also told me that the owner wanted him to drop me off in Boston and take someone back to Palmer and then come back to get me, and that when he told the owner that he would then be late for me, the owner said too bad.

I told him he better get me at 6:45. None of the drivers who take me have the time to do another run; they hang around in Boston until I am done. There was no sign of him at the appointed time. I called and he didn't answer. I called the owner, who impatiently told me that he would look for the driver. About 7:30, a different driver called and said he was stuck in traffic on Memorial Drive. When he picked me up he said the first driver had gotten a flat tire. I don't know how he got a flat tire when he was supposed to be waiting for me.

My new driver had been in the car all day. He had started at 4 a.m. and was just beginning to call it a day when he got called to come get me. He was pleasant, albeit telling me more than I needed to know about what his babysitter did with him. He asked if we could stop at a rest stop, and I said sure, why not. At this point I needed to decide if I was going to just eat the Cheez-its I had brought from the donor center or get something to eat. I knew that by the time I got home it would be too late to make anything. I thought I would get a slice of pizza, but that place was closed, so I got a cheeseburger at McDonald's. The less said about that, the better.

When we got to my house around 9:30, my driver was upset that I hadn't left a light on. Some people might think I should have left a light on, but I said I didn't want to use electricity all day when I wasn't there. Looking at the woodsy area around my house, he said, "A bear might get you." He waited to make sure I got in OK.

A touch of kindness in a crazy day.

Still, I had a bad headache, and after doing a couple of things, I went up to bed.

Harsh words that I said to myself

Sometimes a critical voice comes into my head, such as this admonition when I walked up the stairs to a Pilates class at the Hampshire Regional YMCA this morning:

"Walk like a normal person."

Somebody was behind me, and I didn't want my slower pace to hold her up. I think I might have even mouthed the words or possibly even mumbled them. In any case I heeded them and walked up more quickly. I doubt it bothered the woman behind me. It was just bothersome to me. Not a problem in Northampton, although they might run you down on the stairs in the New York subway system. I am normal enough on the tennis court. Stairs are the last frontier.

Once in class I did well. I have caught on quickly. I even discovered another vertebrae in my back so that when lying down, I can touch more of my back to the mat, one section at a time.

After Pilates I rode a bike for half an hour, followed by a not too difficult decision on whether to lift weights or head to Woodstar before the Sunday morning crowds arrived. I chose the latter. Usually I bring my Sunday New York Times, but today, much to my annoyance, it was not delivered. I did get a paper: yesterday's, delivered today. I took my laptop instead.

I usually don't mind reading on line, but on Sunday, I like to spread the sections around and save what I want, usually the Book Review, for the next day or so.

I have had delivery issues before and am not alone in this for The Republican as well.

This is difficult for newspapers to control, but if they want to hold on to a loyal and dwindling print readership, they should devote more resources to figuring it out.

Day of the Dead

Catrinas, figures in Day of the
Dead celebrations in Mexico.

My volunteer job as a classroom assistant at the Literacy Project in Northampton is turning into a two-way experience.

Yesterday, I learned about the Day of the Dead from two students I was tutoring.

It's rewarding to be both a teacher and a learner. Here's how it happened: Four students and I were doing a section on storytelling.

I went over the definitions for words that would appear in a little piece about storytelling that they would read to themselves. After that they did exercises such as fill-in-the-blanks and a crossword puzzle. Lastly, the instructions called for them to write a story.

Two men from Mexico wrote similar stories about the Day of the Dead, which I learned is a primarily Mexican holiday in which families build an altar and leave food, drinks and other offerings to their deceased family members. If they don't do it, the dead will cause trouble.

I asked one of the men for the Spanish words – Dia de Muertos – and then asked him to repeat it for me until I said it right. I liked the fact that he was teaching me and I was teaching him.

This is a great volunteer opportunity because the students really want to be there. Plus afterwards, I went to the Don't Eat Lunch Alone networking event at Packards and talked to some interesting people.

Busy busy

Let sleeping dogs lie

Well, she was sleeping until I woke her up by creeping along the floor to get a good angle for a picture.

Maddie has seemed happier since Katie and Joe came back. I had thought she looked depressed, or maybe I was projecting my feelings onto her.

In any case, when the kids left and I cried about my empty nest syndrome, people said they'd be back before I knew it. And sure enough, here they are. The first few days I tripped over suitcases and smiled in welcoming back some of the old chaos. A few days after that, when the obstacle course was still there, I wasn't so happy about it and lugged the suitcases into a certain person's room. Out of sight, out of mind.

Adding a certain je ne sais quoi to the living room, Joe's hockey bag is under the piano, his stick is resting on a wood beam, and a laundry basket leans against a wall. Rolls of Christmas and Hanukkah wrapping paper are laid out on the floor, and a wooden bench is filling up with Hanukkah presents (in blue) and Christmas presents (in gold and red).

It's definitely lively.

Last night I went with Joe and Katie to Jim's house, where we had dinner and they put up and decorated the tree while I watched, curled up under a blanket on the couch.

They will go to their father's for Christmas Eve and Day, and then on Sunday, Diane and her family will come here for the Hanukkah celebration that we couldn't have on the real Hanukkah because the college kids couldn't come home. You don't move the serious Jewish holidays, but we figured this one was OK. Ben and hopefully his girlfriend Meg will come, as will Deb and Charlotte, our extended family.

Tomorrow night I plan to go to the Sierra Grill in Northampton for the annual Night Before the Night Before Christmas beer dinner, a five-course meal with a beer for each course from Dogfish Head brewery (I'm having pheasant.) I've done this before with friends from my junior year at Wesleyan University, and it's a lot of fun.

This time last year I couldn't go because I was still not allowed out in public drinking beer and eating restaurant food. The year before I was in the hospital, having just relapsed.

Going out will be good. Since I don't drink very much, I'm sure my friends won't mind finishing my beer...unless the beer is so good that I need to drink most of it myself.

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