Tuesday, May 29, 2018

Driving around in cars with ex on our anniversary

On this day 35 years ago...

Today is my wedding anniversary. I spent some of it with Jim (that would be my ex, if you don't know), driving around doing some business involving Katie's car. I drove it down to Enfield and followed him to the Ford dealership, where he left it for a transmission repair that is under warranty.

Then he drove me home. And we argued the whole way.

HA, not really, that is a flashback.

Actually we had a nice drive talking about this and that. We have a lot in common, of course starting with our three wonderful children, but also including love of newspapers (though not all that they have become) and admiration for good writing and annoyance with bad grammar specifically and bad writing and general. Back in the day when we lived in sin in Florence, we would go down to Jake's for breakfast, spread our Sunday newspapers out, and talk about interesting stories for as long as we saw fit to sit there.

Today while Jim was in the dealership, I looked at my phone and saw a tweet that inspired me to ask, when he came out, if he edits everything he reads. He nodded.

Someone was tweeting about myelodysplastic syndrome, or MDS. The writer said, "Here are the symptoms." Instead of following through, he listed the functions of red and white cells and platelets. It was just a tweet, but still, I wanted to reply, hey, if you're going to tell us about symptoms, let's hear them.

(According to the Mayo Clinic, "Myelodysplastic syndromes are a group of disorders caused by poorly formed blood cells or ones that don't work properly." In the beginning there are no symptoms, but later there is a long list of symptoms, such as fatigue, similar to leukemia's. )

I reminded Jim why I'm interested in MDS. It is what the brilliant jazz saxophonist Michael Brecker had before he got the acute myeloid leukemia that led to his death. The drive to find a bone marrow donor for him is how I got my donor, Denise. I wrote about it for the Philadelphia Inquirer, the late musician's hometown newspaper.

So, talking about a pet peeve led to talk about life and death.

We had talked on the phone early in the morning about another kid-related project: getting the old lawnmower serviced so that Joe can use it. About to leave for tennis, I told Jim that he could go into the kitchen and get the garage door opener so he could get the lawnmower out. He was going to put it in the back of my Subaru to get it serviced while I drove Katie's car to tennis.

True confessions: I scurried around the kitchen trying to clean up quickly. It didn't look that bad. But compared to the way he lives, it is a big mess, and I didn't want him to see it. If you asked me why, I wouldn't know exactly what to answer.

Last year I wrote an intense post about my memories of our wedding day. One of Michael Gordon's photos illustrated it. Facebook kindly offered it up today as one of those memories "we care about," so I thought I'd use it again.

I got weepy thinking about all the people from that day who are no longer with us. Notably, of course, my parents. I talked to Katie about the car and other stuff and then we started laughing about a bunch of things and then I forgot to be sad.

Thursday, May 24, 2018

On a bumpy ride, might as well write

I am writing this in the back of a speeding car with bad shock absorbers, to see how it goes, on my way home from Dana-Farber. Rap music blares, and hot turnpike air blows onto my face from the driver’s open window.

Healing Garden at Dana-Farber

On the way there, I asked her to turn it down. She did so, infinitesimally. I asked her again. "I did," she said. Her boyfriend, sitting next to her, turned slightly and looked at me out of the corner of his eye. Her move reminded me of when my parents asked me to pass the salt to my sister and I moved it so slightly across the table that she would have needed an extension arm to get it.

Aha, I thought, I remembered to bring headphones. I pulled them out and put them in my  iPhone. Only one side worked; the other was pure static. I blasted Dear Evan Hansen. Anybody have a map?

She opened her window. My throat hurt. I must have picked something up over the weekend at The American Association of Journalists and Authors conference in New York. It was successful but exhausting. In my second year as a member, I knew more editors and writers with whom to schmooze. They are a friendly bunch, more than willing to share information and tips. 

The part that might have started my throat hurting was a “speed dating” event with editors, Client Connections. You have nine minutes to make your case, and then you’re up and out and a new batch floods in. It is a lottery. You can get zero or five. I got five. By the last one, with a sweet editor from WebMd, I couldn’t get out a full sentence without coughing. I apologized and asked if she could talk, to tell me what they need. 

Beforehand, client connections veterans said that is probably the best approach with publications like this anyway. I did speak long enough to tell her one idea and give her my spiel. (Four bone marrow transplants, knowledgeable about cancer survivorship and about health writing, a valuable combination, knowing both sides, newspaper training…)

Back to my car ride.

I texted Katie. She said to think happy thoughts.

Did I say my throat hurt? I skipped tennis this morning. I also skipped yoga. If I skip both of those, you know I'm under the weather. Maddie and I walked around the lower lake. Dragging, I found it hard to believe I was the same person who hiked 12 miles less than a month ago. It didn’t depress me , just reminded me of days when I was dragging due to being really sick.

On the ride to Boston, I took an oxycodone. The bottle is in my purse on my ECP days. I don’t automatically take it anymore; I have not had serious pain so it is not necessary. I hardly ever take it so that I figure when I do, it is OK. 

When I arrived, I told the story to my funny nurse, Mark. It cracked him up. He called over another nurse, Diane, and had me tell her the story. A pathology fellow came around. We talked about my high blood pressure issue. I remembered that the last time I saw him, he had told me he used to be a monk. The discussion turned towards meditation for blood pressure control. (Mark is all for it.) I asked the doctor how he did it. He said he used to focus either on the feeling of air around his nostrils or on his discomfort when sitting on a hard rock and meditating for 13 hours a day. Then we drifted into ayahuasca territory and a brief exploration of the Amazonian plant mixture that can induce altered states of consciousness. We talked about heaven, reincarnation, the after life, and nirvana. I said I wanted to be myself, playing tennis up in heaven. Mark said that judging from experiences described in certain books, it is possible. I need to remind him to give me the list.

(Now she has turned on the AC and  is talking on the phone. The hot air was better; my neck is getting cold. )

I mentioned the lodge that we passed in the forest in Costa Rica. We looked it up; in the photos it looked like a resort while in person it was more of a shack. Then we took a virtual trip to the other retreats and came to the conclusion that it is a veritable industry. There is even a Trip Advisor-like guide. They all seem to have one thing in common: You will puke your brains out (not my words) before seeing God.

Mark and I were spelling it wrong. The patient in the bed next to me corrected us. He knew because his sister, sitting with him, said her son was moving to Costa Rica. The patient was a newbie. We both had two arms going. The sister told us her son, a firefighter, was retiring early so he could move to Costa Rica and build a house. She would get to visit once a year. Lucky her. Her brother was scheduled for a second bone marrow biopsy. He has Waldenstrom macroglobulinemia  and didn't know what to expect. 

I said a lot of weird things happened to me, and they figured out what to do. 

This made me think of my nurse Vytas, whom I miss very much. Wherever I was, he turned up. He would stand by my bed or plop down in my chair and call me Nervous Nellie. 

"They'll figure it out," he would say.

I told my neighbor patient that the first time was the hardest but then it got so routine that I don’t even think about it.  And with two arms it goes much more quickly than in the beginning when they used one. (Down from three hours to two or a little longer.)

“It’s all good except for the nurses,” I said. (I almost wrote, I quipped, but then I almost gagged.)

That Diane, I said, pointing to his sweet nurse, who had covered me with a warm blanket when I came in, “if you ask her for a blanket, she’ll give you a lump of coal."

“Or a block of ice,” Mark quipped back.

Because I fiished early, I walked over to the platelet donor side, looked at the row of them to check if any were immersed in something, and walked over to a woman with pretty white hair.

“Thank you for donating,” I said.

A nurse talking to the donor next to my person said to me, “I know you..”

I answered, “I’m a frequent flyer.”

He said, “You’re also a frequent thanker.”

“Well I don’t want to disturb them,” I said.

“This one is already disturbed,” he said, looking at the donor. She rolled her eyes.

I told the white haired woman about the anonymous donor who saved my life by going in  to donate for me the night I needed platelets so that I could get the tube for dialysis. It was the night that Diane sat in my room, crying, because she had taken Advil (or something like that) and could not donate.

The woman thanked me for the story. A Dana-Farer pharmacist, she said she would stop by and see me next time. I couldn't thank the anonymous donor, so when I'm up to it, I like to thank the donors sitting on the other side of the donor center from us ECP-ers.

On the way out, I stopped in the Healing Garden. It is so peaceful in there. But it didn't last long. A television crew came in to set up for a commercial. I had seen them before, rolling their equipment carts and cameras at a good clip along the corridor. I jumped back a little to get out of their path on my way to the Kraft Family Blood Donor Center.

When the music is not too loud, I am trying to make friends with the driver. She is on the phone (yes, while driving) scolding her son for being out with a friend when he is supposed to be at her mom's. She has two boys and wants a girl but had her tubes tied. I ask can it be reversed. She says no, she could get in vitro but it is too expensive. Between her and her boyfriend, there are three boys. She fantasizes about having a miracle baby girl. Her name will be Miracle. I think that talking to her is an advance over past rides when the craziness made me crazy. I give her a bag of chocolate chip cookies. 

Back at the ASJA conference,  I attended sessions on essay writing and how to write for the New York Times and attended a women’s magazine pitch slam.

I definitely have a lot of material.

This overlong blog post took me all the way home from around Framingham. The sun is going down. I am going to go into the house and put my legs up the wall.

Tuesday, May 15, 2018

Good Mother's Day and a walk down memory lane

Family selfie with Ben, Katie and Joe
On Sunday, Katie and I took out our bikes for my first ride of the season, going for just about an hour on the bike trail from Hadley to Amherst.

We wanted to get back on time for Ben and Joe to come for a Mother's Day cookout.

As is the case when discussing running distances, "just" can be a relative word.

As in, one person saying she had just run eight miles, meaning not a lot for that person, when you had run five and it was enough.

Brigham and Women's Hospital, 2003
I was thinking about how "just" an hour is relatively a lot considering what I could do on a Mother's Day fifteen years ago. That's when I had gotten out of the hospital for Mother's Day after my induction chemotherapy. I would have thought that even a few minutes on a beautiful bike path would have been a big accomplishment. Those days are coming vividly into focus as I revisit them and dig out photos to go with my posts on Health-Union.com.

My post about how I developed skin cancer is on the skin cancer site, but my leukemia posts are still in the queue; blood.cancer.com  is a new addition to the platforms of content on various illnesses and conditions.

The photos are in a mess of papers, pictures and newspaper clips in a box next to my bed. Some of it is in chapter form from my so-called memoir, which I shelved, or rather boxed, after getting polite rejections from editors. They liked my writing but said I would have had to be famous for them to want another cancer book.

Without getting out of bed, yesterday I rolled over, leaned down, and started digging around.

It was kind of strange but not too bad to pull out a photo of me riding a bike in my hospital room after my first round of chemo in April, 2003. It's going to illustrate a post about hospital exercising. My mother took the photo. She got a kick out of seeing me up on the bike with my IV pole. Much better to be untethered.

The tennis bear will illustrate a post about hospital room decorating, about how important it was to make my room a homey place. It revolved around Diane's brilliant idea of getting a lamp. It ended up going everywhere with me, including trips to the emergency room when I suspected I would be hospitalized.

My guy friends from our mixed doubles team sent me the Ronni bear that occupies a place of honor in my bedroom. In the photo in my hospital room, she sits on a handmade quilt  with blank squares where co-workers wrote me notes. I remember how touched I was when I pulled that bear out of the box. I particularly liked the little tennis racquet. It made me smile.

But back to the present, it was a great Mother's Day. Having all three together was a special gift. Ben brought the food. Katie set the table. Joe cooked.

When they were getting ready to leave and we took a few photos in the driveway, I said, "I can't believe you all use to live in this house."

Now that Katie is closer, it should be easier to get everyone together.

Friday, May 11, 2018

On being in paradise and coming back

Daily yoga at Villa Pelicano
I think I surprised everyone by saying that I was going to Costa Rica with less than a week's notice, but I did it, and I had a fabulous time, and I have been feeling tired (from the energy expended)  and a little farblondjet (due to no longer being in paradise and trying to figure out how to maintain some of what I got over there).
Still, it is my problem at the moment and as a wise son says in this kind of situation, "It is what it is."

If that isn't a First World Problem and a Healthy Person's Problem, I don't know what is.

I surprised myself and one of my yoga teachers at the Hampshire Y, Megan, when I said I would look into it after she told the class that she had some spots left in a women's self-care and yoga retreat in Costa Rica ... happening in less than a week. After checking in with some of the people who watch me (mainly my daughter and my nurse practitioner), and checking to see that I had a valid passport, I pondered the discount she offered, a great one for seven days, with two meals a day that turned into three when you considered the delicious leftovers.

I sat at my kitchen table and thought about how my life is good, but wouldn't it be great to break out. I haven't gone anywhere major in a long time. I had appointments to rearrange and a lot of miscellaneous stuff, but I did it, well, most of it, and was so glad I went.

We were on a private estate with views of the water, yoga every day, and the sound of birds early in the morning. Maybe they were saying, coffee, coffee, but whatever, their call got me out of bed before dawn. The coffee was usually made by someone else who got up even earlier. All I had to do was pull down the lever, fill the cup, and settle in on a couch or chair and watch the day dawn.

I keep starting this post and going back to it because it almost seems like a dream that is hard to recreate. 

This might seem like a small thing but my laptop (to some friends' understandable annoyance) has become an extension of me. I didn't bring it and therefore didn't do the writing I had thought I might do. Otherwise I would have done some blog posts in real time.

At Manuel Antonio National Park
It seemed to us that there was as much uphill going down as there was going up. This might not make sense but it was because going both ways, there were a lot of ups and downs. (Note to self: Write something for my new gig at Health-Union.com about how this was a lot like cancer treatment.)
To save space, I instead took an iPad (a gift) that had flung itself off my counter when I was packing and didn't make me want to write on it, due to the crack across it and my clumsiness in figuring out a new format. Plus, it might actually be broken because when a new friend tried to help me scroll up and down on a blog post, it kept getting stuck. I put it away and was more unplugged than I have been in a while. I think this was a good thing.

I wrote a little something on Facebook on April 28:

"I want to move here, which is what people on vacation often do. I’m at a private estate, Villa Pelicano, in the town of Manuel Antonio, with a group of eight fabulous yoginis from around the country, plus our teacher Megan. Every day has a theme. Yesterday was fortify. I did it with a 12-mile round trip hike up to a waterfall. We walked over a suspension bridge to get there and then got into a pool. It was exhilarating. They were surprised that I made it. On the way back in a tropical downpour, my knee started to hurt a little. I jogged towards the finish, thinking that if I got there faster there would be less time for it to hurt. Last night, instead of being tired, I was wound up and energized. I really love this group. We do yoga every morning on the outside deck seen in the photos. Then we have activities. We get two free treatments at Holis Wellness Center, down the road a few minutes. It is so interesting to get to know people from scratch in this special environment. We talk about anything and everything. Oh did I say we our own chef? And the coffee is perfecto. I want to ask her to do it again and maybe get some friends from back home to go. When you break down what you get, it is a great bargain!"

That was all I could manage to write on my iPhone. I want to add that I couldn't have done the hike without the new friend who walked with me. There was supposed to be one group to go the whole route and another to take a car and start a little farther up. Those who I asked for recommendations suggested I go on the shorter hike. I would have done it. But one by one, the people in that group decided not to go at all. It was either the whole or nothing. They kept talking about a bridge that I wanted to see.

Most said they wanted to go fast. I knew I couldn't do that. Alison volunteered to go with me "slow and steady." We stopped briefly along the way to look at bugs and plants; she knew a lot about both, and it was an educational distraction. I zigzagged up and down and took it bird by bird, or in this case, rock by stone. We talked about so many different things that by the top, it seemed like we had known each other for years.

The others, who had gotten to the lunch spot and waterfall before us, gave us a round of applause when we emerged. Then we walked over the bridge to the waterfall and took a dip. I didn't look down, instead looking ahead to Alison when she got to the other end. She was so positive and fun to be with that she was a great focal point.
On the way back, she recited a mantra. I didn't know what she was saying, but I hummed along. 

Going over the stones to get into the pool was probably the hardest part, but it was worth every step of the way. Athletic Rachel from Colorado went in for a second dip and provided encouragement. It was a peak experience. Coming back through a tropical storm added to the magic. All the creatures woke up. The green was greener and the flowers brighter. The frogs were so loud. It was starting to get dark. 

Triumphant with Alison McKee at end of bridge
 A bug bite on my back is driving me crazy. I took a Benadryl so I wouldn't lie there itching for three hours. I think the new Fellow on rotation might have thought I was in bad shape because I was slurring my words. Afterwards I asked her how you hold on to all that Zen. 
The challenge, of course, is bringing some of it back with you. I got back around 1 in the morning last Tuesday after making a connection that gave me just enough time to board my second plane in Charlotte.

The next day I went to ECP. Then I came home and played tennis. Then I tried to reorganize. I have several writing projects going at once. Yesterday I had ECP, two weeks in a row, because they didn't want me to skip too many due to vacation. 

Before ECP I actually skipped a Wednesday, the day before yesterday, at the Canoe Club. It would have been my first outside lesson with George of the season. This was big: The Canoe Club is another kind of paradise for me. But I wanted to go to Megan's yoga class, to hear her voice and do her calming yin yang yoga and feel myself back in Costa Rica just a little bit.

"Don't judge yourself," she said.

For people of a certain ilk, like myself, this is hard to do. 

In our circle we had talked about trying to be less goal-oriented, to be more like the sloth that we saw, to go with that good old flow.

Hopefully I can keep just a little bit with me.