Thursday, January 18, 2018

Missing, and appreciating, my mother on her birthday

"When a mother dies, a daughter's mourning never ends," Hope Edelman wrote in her book, Motherless Daughters

Her books are mostly about early loss, but her words ring true for me, and I assume for many, who lose their mothers at any age. I think that if I lost my mother tragically or early, instead of when she was in her 80s and not sick for very long,  the pangs would be worse. But the words "good long life" only get you so far when you really want your mother back. 

When I had both of my parents and a friend had lost her father and I couldn't imagine living without them, I asked what it was like. She said that in the beginning it is like being kicked in the gut; you never get over it, but the intense pain goes away. She was right.

I like to believe my parents are around, that the quarters I find here and there are sent from my mother so that I can have them for parking meters. I imagine her saying, "Al, can you get a quarter for Ronni," and he passes it to her and she drops it down for me.

Shortly after her death, she came to me in a dream and said, "I'm going on a long trip and can't talk to you but I will be OK." We were in our tiny kitchen in our New York apartment. 

I am OK too, but on special occasions I want her actually with me. Occasions like today, which is her birthday.

It's hard to believe she has been gone since 2006.

In addition to being beautiful inside and out (the nurses called her Jackie O.) and making everything beautiful and being the person who took care of others and who many with a problem wanted to call, and being an artist who could have had her work in galleries if she wanted to, and being a successful businesswoman who designed fashionable gorgeoso (her word) jewelry, she had a great sense of humor and was good at having fun. On the downside, she gave me her worry gene. On the upside, she practiced mindfulness before it was called that, designing her garden in her mind when she had
trouble falling asleep.

She had beautiful handwriting and set a lovely table.

I often wonder why I survived the crazy things that happened to me, and maybe part of it was the endorphins she created by making me laugh. I’m sure her light touch helped Ben, Joe and Katie also. She drew cartoons on the board in my room, such as a monkey, hanging from a tree, saying, "Hey, hey, what do you say, chemo's gonna be done today."

When we walked down The Pike, the long connecting corridor at Brigham and Women’s Hospital, we stopped in the nice weather at the entrance that she dubbed The Riviera because of the trees and flowering plants. We each got in a wheelchair, had a Coke, and watched the passers-by as though we were in a café. One day I told my mother and the nurse that I thought I would stick around in my room and throw up. The nurse got me a Coke. With the nurse’s and my mother’s encouragement, I got up and out. When the nurses did their platelet dance – flapping their arms to make me get a bump – my mother jumped around with them. When I cried, she said, "It's OK to cry."

My sister has pointed out that as hard as it was to lose her, it was good that she wasn’t around for the relapse in 2007. Not to mention (which I just did) the three subsequent transplants, the coma, the nearly 3½ months in the hospital, and the long recovery.

The timing of my diagnosis, about a year after my father’s death, was difficult, but after the shock wore off, it gave her a focus. When it was all over, we said to each other that, oddly, during some of it we had fun. Not so much on nights like when I had a 105-degree fever, but she appreciated how a nurse called her every hour to tell I was wrapped in cold towels and would be OK. She knew when to stay and when to go, finding a waiting room with a comfortable purple chair and going there when she could see I needed to rest. She got a kick out of watching me, while connected to an IV pole, ride a bike in my room. In the end it seemed like it had given us special time together.

She saw me healthy, going to New York for play dates with her. (As in, seeing plays, often with her beloved grandchildren, but also playing.) 

She didn’t have to absorb the second shock of seeing me relapse. Also, her last two years, she grew increasingly unsteady. (In true form, she decorated her cane with jewels.) It would have been hard for her to stay at Diane and David's like she did during my first round of treatment starting in April 2003, to go up and down stairs, back and forth to the hospital and then back and forth from New York, and when I was home, back and forth from NYC to South Hadley. 

Today I have two appointments, a recently scheduled dermatology check to look at a spot on the back of my neck and some thingies on my scalp.

I have one ride to the dermatologist’s office in Chestnut Hill, then a ride in the Boston area, officially called The Ride, not to be confused with the other rides I get within the state, to take me to Dana-Farber for ECP, then another ride back home.

My mother was always concerned about a mole that I have on my back. She kept saying I needed to have it watched. Nothing has come of it. But I have gotten so many other skin cancers that I have lost track. I think my post-transplant life in dermatology would have driven her crazy. But then again, she probably would have taken it in stride. Like she did with all of it. 

So, happy birthday to my fabulous mother.

Friday, January 12, 2018

Sad news about influential professor

Jon Klarfeld
Lotta sad things happening these days.

I wrote about the Literacy Project's Zoe Rosenthal dying after being hit by a car, and now I have news about the death of Jon Klarfeld, my favorite and most influential professor from my master's program at Boston University's College of Communications.

Monday, in the wake of Donald Trump declaring himself a very stable genius, a conversation with a friend turned to where The D went to school. (The Wharton School of Finance and Commerce at the University of Pennsylvania.)

This led to talk of our own education and to my saying how influential Klarfeld was in starting me on my career. I recommitted myself to seeing him after a previous attempt didn’t pan out a few years ago.

The next day I got an email saying Jon had died in the morning of the very same day I was talking about him. 

It was sad news.

I went to graduate school after realizing my news writing needing help. Having moved to Boston after graduating from Vassar, I wrote for a now-defunct community newspaper, The Newton Times, and was a stringer for the Quincy Patriot Ledger.

I like to say that in the one-year program, Klarfeld scared good newspaper writing into me.

When he dictated the details of an accident or a fire and had us write it – pound  on manual typewriters actually – so that it would engage the reader, he prowled around the small classroom.

I held my breath, afraid to be the would-be reporter who got it so wrong that he made fun of you in front of the whole class. The story that sticks in my head concerned flames that broke out while an overweight man was stuck in the bathtub. If you put the detail about the bathtub man down low in the story, you could be the subject of ridicule in front of the class.

His style didn't sit well with everyone, but to me he was fascinating, like a character from an old newspaper movie. But I liked his sarcasm and dark humor, and it prepared me well for life in the newspaper world. 

He hated unnecessary words. A friend remembers that it irritated him when someone wrote in order to instead of simply to.

He said we shouldn't puff ourselves up by calling ourselves journalists.

"You're reporters," he said, in some kind of growl, or maybe he growled it, but we learned to (almost) always used the versatile said.

I agreed with most of it except for his critique of my name.

 “Ronnnnni,” he said, drawing out my name dismissively. “Nobody is going to take you seriously if you don’t change your name to Veronica.”

I hung around his office with some others Klarfeld groupies, or, maybe you would say newsies. We listened to him tell stories. Many were about his hometown, Holyoke.

He sent me to his hometown newspaper, the Transcript-Telegram, where he had a pipeline with the managing editor when jobs opened up.

The month before I graduated, I got a reporting job in what was then called the People department. I married my editor and had three wonderful children.

In 2015, a beloved creative writing professor at Vassar, William Gifford, died. When I went to the memorial, I felt so bad that we had lost touch. I left determined that the same thing would not happen with my best journalism teacher.

“Hey Jon, remember me? Class of ’79?” I emailed.

“I tell everyone how you started me on my brilliant career by scaring me into being a good reporter. You were right about a lot of things except that I should change my name to Veronica or else no-one would take me seriously. "

He wrote back, "Ronni (or Veronica),"he wrote back. "What a surprise. Great to hear from you."

I thought maybe we could have lunch when I was in Boston for follow-ups at Dana-Farber. Just about every day I could do it, he was busy with teaching or conferences (still sending reporters out into the world). 

We went traded emails for several months yet could never find a time. At least I told him how important he was, something I never did for my Vassar professor.

And at  least we had some virtual conversations.

“Not sure what I would tell the students these days," I wrote. "The outlook is not rosy like when we were in school. I guess somebody has to do the writing even though it’s not in print. Do you teach them how to express themselves in 140 characters or less?

He replied, “You're right  about someone having to do the writing. Anyone who uses 140 characters or less immediately receives a failing grade from me.”

I never got to ask him what he thought about 280, but I’m sure he would not be amused.

Saturday, January 6, 2018

Thanks to Facebook, a painful look back

PJ with her Bouviers de Flandres in 2012
Facebook thought I'd like to look back on a post from four years ago, Sort of oxycodone-free zone, in which I wrote about a break from the excruciating pain after another tooth extraction.

No, Facebook, I would not like to see this memory, but you were going to share it with me anyway. Another freelancer wrote a story about how harmful this imposition can be to those who suffer from PTSD: They can be confronted with a photo or another bad memory of someone who abused them. It could even be one of those "Celebrate xx years of friendship with so and so."

I don't know if I technically have PTSD, but I definitely have triggers.

I wrote this on Jan. 6, 2014:

I woke up yesterday with my usual toothless-ache and took 10 mgs. of oxycodone, followed by another dose about five hours later.

Then I went out for coffee with a friend, and a strange thing happened. It didn't hurt again for the rest of the day. I thought that maybe coffee, conversation and a raspberry-oatmeal muffin at Rao's in Amherst had cured me. I felt so good that I even went to the gym.

I went on to write that the pain returned that night but I was encouraged by the break and by the knowledge that good conversation and coffee could hold the pain at bay.

Having lost 12 teeth (gradually) after my fourth transplant nine years ago, and having cried through many toothaches from hell, my dental drama loops into a whole period of time that I would rather not relive.

The only thing to say about it is that when I read about how bad it was, I have a renewed appreciation for being pain-free.

Another upsetting aspect of the post is that it brings back memories of two friends who I lost.

One through the mysterious (to me) end of a friendship and the other through the mysterious ways of leukemia that have often made me wonder why I lived and why a friend with the same disease died.

The friend whose company was good medicine during that pain-filled period is a friend no longer. I don't know exactly why this happened. We were longtime friends with similar interests, often spending a good part of the day together without knowing where the time went. When I inquired about a year ago why the friend was acting distant, the response I got was that the friend didn't enjoy my company any more. We didn't have an argument or anything like that. It hurts to lose a good friend... and to not know why. With hindsight my blog post about a good time is not a good memory.

So, strike #2 for Facebook.

Strike #3 concerns the comments. Not the content but the fact that the friend who wrote a comment died from the same kind of leukemia as mine. (Acute myeloid leukemia.) We had so much in common that we called each other doppelgangers. She too had multiple transplants, had three children, and was a runner and a Dana-Farber patient.

Patricia, aka PJ, wrote, "Just a thought. Years ago, I had excruciating back pain that turned out to be a herniated disk. The pain, which lasted over a week, despite copious amounts of painkiller and a cortisone shot, went away after I went to the hospital, was admitted and put on a morphine drip. The next day, I was pain-free and released. I went to see a neurological surgeon who advised after looking at the MRI (even I could see the bulge) that I have surgery. He said sometimes pain lets up by itself due to positional shifts in the body but that it will come back. Is there a chance that some nerve in your jaw was disturbed by your tooth surgery? It sounds like nerve pain to me. Maybe it will just go away. Feel better soon."

We frequently commented on each other's blogs, sometimes with advice, other times to share a laugh or say we understood. We had met virtually when she found my blog and contacted me. Later we met in real life.

About six months after she wrote that comment, she was gone.

I went back and read the last entry on her blog, which is here.

Wednesday, January 3, 2018

Our family's Hanukkah miracle

Tea for toddler and doll
After witnessing the lighting of two menorahs and going to two parties during real Hanukkah, I went to another party on Saturday at Ben and Meghan's. It was an attempt to cover as many bases as possible. Due to family comings and goings and the Christmas celebrations, it was the best time to do it and to get all the kids at once.

So if you count the time from first to last candlelighting, our Hanukkah miracle covered 18 days.

We exchanged presents, lit the menorah, ate good New York bagels courtesy of my niece Lily, and talked about this and that, one big that being who will the Democrats nominate in 2020.

As a follow-up, yesterday Ben, my go-to politics guy, sent this Politico story on which 2020 democrat won 2017. What can I say, as a family we enjoy discussing politics.

They said I was not woke for still supporting Al Franken. Maybe it's because I read his book and felt that I knew him, but I said I was upset that he resigned. He could have gone to a sensitivity training and helped form a commission on sexual harassment. Interestingly, on the way down, Katie was explaining the meaning of woke to me. Then at the party it was mentioned at least a dozen times.

Nell seemed to like the tea set I got her. It came from one of the stores in South Hadley's Village Commons. It feels good to support the local economy.

Katie gave me Ask Bubbe, the talking Jewish grandmother doll, made by a company called Mensch on a Bench. You squeeze her hand and she says funny things such as, "Oy vey, I'm tired, all these questions," and, "It wasn't like that when we were kids."

I guess I'm guilty of that second one.

I'm not sure about the gray hair in a bun, though.

Today is my Dana-Farber ECP day.

Dr. Linn recently checked my skin, but I found a new suspicious spot on the back of my neck. I tried to take a photo of it but was unable to twist my head far enough. So Katie took one and I sent it to the doctor. I want to know if I can just use Efudex like I'm doing on my hands now, or whether I need to get it looked at. Maybe my nurse friends today will have an idea. I hope it's just the Efudex. My skin turns screaming red, but it's better than getting stuck by more needles.

Friday, December 29, 2017

Good days during Dana-Farber-free week

With the crew at Kate's Kitchen on Christmas
I hope I didn't sound too dramatic in my last post when I wrote that I fell. I healed pretty quickly and was back to normal after a day.

With no trips to Dana-Farber this week (woo-hoo), the days have been good.

Not in order:

On Christmas, I volunteered at Providence Ministry's Kate's Kitchen in Holyoke again. This was my fourth year serving Christmas dinner there. It was snowing and not the best morning to be out. When I got thereat 9:30 a.m., I learned that four families had canceled. The lot wasn't plowed yet, but my Subaru got me in. My first job was to take down the chairs from the tables and put table cloths on. It looked to be a bit much and felt overwhelming but then I reminded myself how much I had compared to the people who would be coming in two and a half hours later to eat. I didn't want to hurt my back, so I made a system where I turned the chair over and rested the seat on the table, lowering it in two motions instead of one.

Lotta tables, chairs Kate's Kitchen
About half-way through, two other volunteers arrived. They helped take the chairs down, put on table cloths, and put out place settings. It went well, and it turned out that some of us had a lot in common. As we sat waiting for more people to come in, we realized that a little corner of us were all from New York. It was good to meet the effervescent new director of Providence Ministries, Shannon Rudder.

Christmas Eve, Maddie and I went down to my friend JoAnn's for fondue with her family and neighbors. I was happy to see the two nice young men in the photo. (Said the elderly woman.) They used to be little kids! As I stood, looking confused, at the set up with beef, chicken, shrimp, bread and vegetables, plus cheese and other dipping sauces, someone asked where I was during the fondue craze.

I said we had small kitchens and therefore small fondue offerings!

The best part was probably the chocolate dipping sauce with Jo's father's homemade biscuits.

With Marc and Ryan Instrum
Today it was 1 degree when I woke up. Not a good day for a dog walk, but turned out to be a good day for a dog. I needed to exchange A Visit From the Goon Squad at The Odyssey Bookshop. Not because I didn't want it – it's next up for book club so I will be reading it – but because after I came home with the paperback, I sat down in the den next to the bookshelf and saw that the hardcover had been sitting there. Maybe I even read it, but I'm sorry to say I don't remember.

I would have tied Maddie up outside, but it was so cold that I brought her in. She was welcomed with big smiles. Everyone wanted to pet her. I took her around to get some other books and told someone that I usually leave her out. They said they'd rather she came in. We took a little walk but it was really cold. Then we went into the bank. She lay down, possibly thinking that it was an interesting day. Then it was back to the bookstore to pick up what I had left there to get wrapped. She sniffed around and then just plopped down, comfortable and warm. Now she is lying in the pool of sunlight on the dining room rug. The simple things.

Saturday, December 23, 2017

Falling down, getting up, going to Boston

Pretty relaxed with a needle in each arm
As I walked into The Kraft Family Blood Donor Center for my internal sunburn Wednesday, a nurse was asking another patient the routine questions, including, "Have you had any falls?"

I had planned NOT to mention that I fell the night before during a clinic at the Ludlow Tennis Center. Instead, I said, "Don't ask me." Then I told them anyway. I had a "good" fall, meaning that I managed to get back up and continue to play. My foot must have turned funny. I lost my balance and went down hard.

"Don't put it on my chart," I said.

Another nurse said they were going to put an orange bracelet on me to mark me as a fall risk. But he said it laughing. And I went over to him and started bouncing around on my feet to show him that I was OK.

I've said it before but I'll say it again: Except for the part with the needle in the arm for three hours, and the part with the unpredictable transportation, and the part about spending basically a whole day on it every other week, going to Dana-Farber for ECP is not that bad.

The driver was a nice older guy who said he hadn't seen me for a while. I couldn't quite place him, but when he pulled into a rest stop, I remembered that he is the one who stops a lot. Bladder problem or cigarette? Who knows. He took Route 9 in, and when I mentioned that the other drivers avoid this crowded road and go all the way to the end of Mass Pike, he said they are the same. They are not, and I was about 20 minutes late.

Marc, the nurse who got me to use two arms last month, came over and did it again. The secret to it is not asking. Because when the other nurses ask, I usually say no, I would really like to have the use of one hand.

But I had taken my oxycodone and was pretty relaxed. You can see it in the photo. The WHATever approach.

Afterwards I went to Diane and David's. Diane made a good dinner. I tossed and turned most of the night. It was probably the after effects of the oxy. Useful when needed for pain but a disrupter of sleep. I kept thinking that I lost my necklace, (one that Diane gave me that I wear most of the time) then waking up and checking.

It was probably a subconscious expectation of going to the dermatologist the next day. The last time that Dr. Lin (Jenn) did a full-body check, I took the necklace off and put it in my pocket. It got so tangled that only the detangler expert, Jim Bloom, could restore it.

Jenn had a resident who came in first. He checked out my spots and recommended doing another round of Effudux (chemotherapy cream) on my hands, also adding my arms. Dr. Schmults, the Mohs surgeon, said it works best when you wrap your hands, which I couldn't do, so the last time I did it I slept in exam gloves. He also recommended doing photodynamic therapy (PDT), aka the face fry, when an opening comes up. I said I thought my face looked OK.

"Is she coming in?" I asked.

Yes, he said, she was coming in.

She basically said what the resident said: The PDT, in removing a layer of skin, kills skin cancer cells. In addition, she said, they now recommend a follow up six weeks after. The resident zapped some places on my forehead and out I went to make the appointments. I'm not crazy about this but the literature says it is safe. And I have to believe the doctor.

The past two nights I have put on the cream and slept in the purple exam gloves. I usually pull them off at some point in the night and wake up with them next to me. The goal is to light up the red spots which can turn into cancer and the ones that may already be cancerous. The spots will then turn brighter red and then hopefully either dissipate or fall off before I pick at them. I need to do it for three weeks.

I have a huge purple bruise on my left thigh and a smaller one on my wrist. It only hurts a little when I sit.

Tuesday, December 19, 2017

Six good things during the past week

Candle lighting at the JCA
Holiday parties and a writing award provided an uptick after a sad week.

1. Went to the Jewish Community of Amherst for a Hanukkah party Wednesday with candle-lighting, latkes and pizza, having seen the announcement in the entryway where I'm doing my Literacy Project volunteering now. It's also where I sent my children way back when. It's much nicer now with the addition to their facilities. I didn't think I would know anyone and so was happy to bump into a former colleague who sends her daughters there. We sat together and made plans to return for one of the rabbi's Wednesday lunch and learn sessions. I'm not exactly sure why, but I was a little depressed and felt better after seeing all the lit menorahs, singing songs, eating latkes and talking to my friend and her daughters.

2. The Dog Writers Association of America gave me its Inspirational Feature award for my story in the American Kennel Club's Family Dog Magazine. It was about how Maddie and I each helped the other heal after our separate near-death experiences. It came with a $300 award. $150 for Maddie and the other half for me?

3. After tennis Friday, I went to a fun ladies’ lunch. I have been trying to remember to put everything in my phone and on paper. I put in my phone from 12 to 2, figuring that Nancy wanted time after tennis to get ready. I bought orange juice and went to Starbucks for badly needed coffee, for I had spilled most of it after putting it on top of my icy car roof in the morning. When I checked my email for directions, I saw that it was really at 11, not noon, so I raced over there. Luckily they were still eating, and there was plenty left. I guess being off by an hour is not as bad as missing my college reunion, for which I was off by a week. (Question: Did I subliminally not want to go? Who knows…)

4. Book club holiday party Friday night. None of us finished A Gentleman in Moscow. We liked the writing and many of the author’s observations about life, but we said we kept waiting for something happen. Avid reader friends who finished it said it was worth it. So we’re going to finish up for next time while also reading A Visit from the Goon Squad. The food was delish, the company delightful. We had a Yankee Swap. Love my book group friends but not so much Yankee Swaps.  (#FirstWorldProblem) Stayed up too late.

5. Saturday, dragged myself to yoga. I don’t drink very much, and after two glasses of wine I felt a little hung over. Saturday night, fun Christmas party at Marianne and Karen’s. So much good food an such a friendly crowd.

Menorah in Riverdale
6. Sunday, packed up for trip to family Hanukkah party in the Bronx. Headed out a little bleary-eyed but stopped on the way at Ben’s for visit with Ben, Joe and Callen. (Nell was away on a girls’ weekend.) In a short time, Callen had turned into a little person! Amazing how that happens.

On my way out, I found a florist where I got pretty flowers to take to my cousin’s. It was good to be with family and extended family. We had more latkes and delectable New York deli sandwiches. I always go for the corned beef. REAL corned beef. This is the second year after Jennifer's suicide. Last year, the first year without her, was the most difficult. I spent some time talking to her twin brother on Sunday. He says that without Buddhism, he doesn’t know how he could have survived. I told him that at the JCA, I met some people who called themselves JewBus. I looked up the definition and found this interesting story.

Stayed over at Residence Inn in Yonkers. On the way back, I was so tired I had to stop twice. Often that's the way it is when you're on the go. The expectation on the way there keeps you alert. On the way back, Starbucks (good) at stop 1 in Woodbridge, Conn., and Subway (kinda yucky) at stop 2 kept me awake.

Didn't get any exercise except for getting in and out of the car. Got back pretty late and thought of a brief run but it was dark. And I thought of Zoe getting hit in the dark. So I went swimming. It's my least favorite activity. Though some who have cut back on running say they get the same high from swimming, I don't feel it, probably because I don't go far enough. For some reason, the last two times I have stopped at 24 laps, the last two doing water jogging. It is boring, not at all like running outdoors when you can soak up the scenery with your eyes rather than getting water-logged in a pool.

A few times in the past I did get some endorphins from doing laps, but last night I was distracted by leaky goggles that I had to keep fixing. I might invest in a pair of prescription goggles. Despite the drawbacks, it did get the schpilkes out.