Wednesday, January 24, 2018
You can take this kind of dream literally, as in, I need to make an eye appointment and it is on my mind; or symbolically, as in, I am having trouble seeing some things in my life clearly, or, regarding the part about not being as well as I thought, anxiety about the approaching anniversary of my fourth bone marrow transplant, or my re-birthday.
I haven't had checkup anxiety for a long time, but my next appointment is on my mind because I have to keep moving it. First it was because of bad weather and now it is because next Wednesday I'm scheduled to sub in the Valley Opportunity Council's adult education program, which I have done the past two days.
On to another topic, I have made a mistake about my birthday.
That is, my re-birthday, the anniversary of my fourth transplant.
I have been saying that it was Jan. 31, 2009. But on some paperwork that just came, it says Jan. 30th!
A day does not a big difference make, but still, it's important to know.
A birthday can be a time to pause and reflect. A transplant birthday is loaded.
Although I think I'm doing pretty well, on some level I'm concerned that a doctor will examine me and find something. Beneath the surface lurks the fear that since the same truck hit me four times, it can hit me again. Hence the nightmare.
You never know what will happen. We learned in the news biz not to say, "Such and such will happen on such and such a date." When you got a press release exclaiming, "The fourth annual most wonderful event in the world is happening over the weekend," you rewrote that "the fourth annual such and such is PLANNED." (And removed the hyperbole.)
So I'm hesitant to say that in a week I will be nine years old. Rather, in week I expect to be nine years old.
Though past the magic five-year cure marker, it's probably safe to join members of the general public who say that they will be a certain age and not that they expect to be that age.
So here goes...drumroll...on Jan. 30, I will be nine years old.
Spits three times.
Toi toi toi!
Thursday, January 18, 2018
"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
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
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
|PJ with her Bouviers de Flandres in 2012|
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
|Tea for toddler and doll|
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.
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.