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

My post about how I developed skin cancer is on the skin cancer site, but my leukemia posts are still in the queue;  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 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.

Saturday, April 21, 2018

AML Awareness Day: A lot to know

The Leukemia and Lymphoma Society (LLS) sent an email stating that today is AML Awareness Day. Who knew?

The letter states:

"Acute myeloid leukemia (AML) is a complex, rapidly progressing cancer that has seen few advances in treatment even as therapies for other blood cancers have taken remarkable leaps forward. Since the 1960s, five-year survival rates for many blood cancers have doubled, tripled and even quadrupled. Today, only one in four AML patients survives five years after diagnosis.

"AML is one of the deadliest blood cancers and the most commonly diagnosed form of leukemia in adults. It is extremely complicated to treat because it is not a single disease, but a group of more than 10 different major subtypes and other rare mutations. With advances in genomics, we can now identify and target specific types of AML. This precision medicine approach is the key to new therapies for patients."

It goes on to give details of its Beat AML Master Clinical Trial, which employs precision medicine to give the right therapy to each patient based on specific AML subtype. 

The website Know AML  states, "Know AML was initiated on the 2 December 2016 in San Diego, CA during the American Society of Hematology (ASH) 58th annual meeting.

"During ASH, a collective of AML patient leaders, professional representatives and industry supporters gathered to formalize how to mark AML World Awareness Day 2017. Their aim was to raise awareness and education in AML to Patients, Carers & Families, Healthcare Professionals and the General Public."

The website suggests different ways for people to help spread awareness of the treatment and support options available. They want you to wear red and black, and, "Everyone is encouraged to share their activities, so if you could film or photograph wearing red and black and then share it on social media using #KnowAML, you will appear on our activity wall.

Some points:

1: Carers is actually a word. I thought the word was caregivers but I looked it up and saw the shortened version.

2. Colors are silly. Not going to wear red and black. In any case all I can think of is Stendhal's"Le Rouge et Le Noir," which, like the author of this story, I read when I was about 17. 

3. Yesterday when I went to have my blood pressure checked, my internist said he didn't know anything about it. I'm all for AML awareness, but it's kind of grandiose to start something and call it World Awareness Day. (By the way it was down to 128/82. He said that was pretty good, not great. I was surprised because I thought it was good. They have changed the guidelines to make it even lower but he said it was good enough and he wasn't increasing my dose of blood pressure medication.)

4. This caught my eye from the LLS email: "Today, only one in four AML patients survives five years after diagnosis." Not that I need reminding, but it reminds me how lucky I am to be alive.

5. When a whole bunch of information comes at you, it's useful to look at where it's coming from.

The LLS trial has the backing of the FDA and is a led by blood cancer researchers from leading medical centers with input from drug companies. Know AML is chock full of studies by leading researchers, but the supporters are all drug companies. This made me leery about a potential bias towards certain treatments from which they would benefit.

For example, in this story about a 70-year-old with symptoms, he is quoted as saying, "My new oncologist recommended the same decades-old standard of care for AML, which is an aggressive chemotherapy regimen. I knew the treatment would have harsh side effects and would not cure my AML.”

First of all, nobody talks like that, a sign that somebody wrote it.

I wondered, how did he KNOW the traditional regimen wouldn't work, besides the concern over his age?

He went with a targeted therapy offered through a clinical trail, using a drug that would only go after the cancer cells instead of the kind of chemo that I had, which wreaked havoc in my system.

Great that they can have more alternatives now.

The story was generated by Celgene, a global pharmaceutical company, a sponsor of the Know AML venture along with three other pharmaceutical companies. 

The professional sponsors are European LeukemiaNet and Haematology Nurses and Healthcare Professionals Group , totally legit, but the major backing of "big pharma," could at least make you wonder.

6. If this is too much information for you, the reader, I apologize.

It was also probably too much for me. For example when I started reading about 10-year survival rates for patients with different mutations and with different kinds of treatments, I realized I was getting into territory that has always made me uncomfortable.

I never wanted to know all that stuff.

My late great friend Patricia did want to know, and we used to have lively discussions about how to decide what is too much information, or too little, or the right amount.

I'm sorry that she is not here to discuss this great big information dump. We probably would have laughed about it, thereby smoothing over our discomfort.

Sunday, April 15, 2018

Good driver, great big geyser

I was a little worried about transportation to Dana-Farber on Wednesday because I had gotten used to my private driver (Katie).

When the driver called to confirm, his pleasant voice reassured me.

The ride was better than extracorporeal photopheresis, or ECP, the light therapy on my blood.

I had a bad feeling when the nurse at the Kraft Family Blood Donor Center put the needle into my left arm. It felt like it hit the wrong spot. I told her so but it looked OK so I can't fault her for continuing the process. I looked away and felt a patch of warmth spreading on my arm. When I turned back, I saw that it was blood oozing.

"Oh, shit," she said.

She called for help. A couple of other nurses came over with gauze. She put pressure on, and the gushing stopped. Mark, one of the more experienced nurses on the premises (the first one who got me to use two arms) came over and put something on to stop the bleeding. My nurse wanted to still use two arms. He said that because they put in heparin for a blood thinner, that wouldn't be a good idea. 

I usually take out my computer and watch something (last time it was a whole episode of The Crown), but I didn't have the energy. I browsed through the New Yorker I had brought. 

Near the end, she dabbed hydrogen peroxide on my shirt to try to get the blood off. Not all of it came off. Luckily it was an old shirt. 

"Sorry about the geyser," she said.

Instead of leaving at 6:30 p.m. as I had told the driver I had expected to do, it was closer to 7. Luckily since he was one of the good ones, he didn't complain.

I was pretty beat but stayed up to have something to eat.

The next day, I had tennis. It is a contract and you need to find a sub if you're not going to play. Since I wasn't sick, I figured I would go. It wasn't great, but it wasn't bad.

On Friday, I went for my session at Amherst Community Acupuncture. I originally went in search of treatment for my neuropathy. I still have those pins and needles in my feet, but I think it might be slightly improved. I have definitely felt some other benefits. For example, the chronic pain under my left shoulder blade has diminished so much that sometimes it doesn't hurt at all. After the episode with the geyser, it started to hurt again. But after treatment, once again the pain went away.

In any case, I always have a nice nap and leave feeling calm and relaxed.

Wednesday, April 11, 2018

On kids moving in and moving out

Joe packing up in 2008 and, below,
 Katie's bags in 2018

The scene was the same: The living room as a staging area.

But the protagonists were different: Katie on Saturday getting her stuff ready for her move to New York.

Joe on Aug. 31, 2008, getting his things together for going back to college.

Katie had been in South Hadley between jobs for about two months. I'll leave the details to her, but I can say she wanted to live in New York, so she left Minnesota and came home to regroup.

She found a new job so quickly that it seemed like she had just unpacked when she started packing up again and then was leaving before I knew it. I expected her to be here longer, and although I of course wanted her to succeed in doing what she wanted to do, I was sorry to see her go. Well, she'll be closer than she was in Minneapolis, for sure.

We had a good little routine going, watching Friends and Parks and Rec and taking advantage of nearby fun places to go, such as The Bookmill on a rainy day well-suited to browsing and reading, and pancakes at Gould's Sugar House followed by a stroll around Shelburne Falls.

She wrote me a lovely note about our time together and got me the beautiful flowers in the photo. 

As for Joe, I came upon a post about one of his moving days when looking back at my blog upon its 10th birthday. I started it on April 1, 2008, so I could keep writing when unemployed and intermittently hospitalized. Then it just kept going. This one from Aug. 31, 2008, made me think about current events: kids moving out, moving in, and moving out again. I wrote:

"I woke up to the smell of late summer/early fall. It is hard to describe a smell. If this one had a color, it would be lemon yellow, not the brighter, crisper color and smell of real autumn. I am still close enough to my latest hospital stay that when I breathe in a sweet smell like this, I take a moment to be thankful that I’m out of lockup.

I also heard a strange sound. It was the sound of the washer and dryer running in tandem. All summer I had been after Joe to keep up with his wash. Now he was making up for lost time. He leaves for college tomorrow, and, true to his word, he was getting it done. It seemed like just yesterday that he had come home from Bates for the summer and the house was an obstacle course of laundry, suitcases, hockey stuff, books, sheets and towels, blankets, sleeping bag plus stuff he had accumulated during his first year away from home. It seems like he just finished putting it all away and now it is time to take it all back out. (And of course if I follow that thought all the way through, it seems like yesterday that I brought my premature second child home from the hospital.)

As I hovered, Joe had said, "You gotta do what you gotta do," 

Katie's move involved a team effort. Katie and I drove to Enfield, where Jim was waiting with a U Haul. He drove it to Norwalk to get Joe, who drove it into the city. Katie and I went in my Subaru, and, finding a parking spot right in front, thanked my father for the guidance.  

They arrived in the U Haul not long after. Jim and Joe did the heavy lifting. Katie did the medium lifting. It was four flights of stairs. I was almost relegated to door-holding for the whole time but protested. So I carried up some of the lighter things. The building was nice, but the stairs were uneven, and by the end of the day I was huffing and puffing. My phone said I had done 18 flights, but it felt like more than that.

It crossed my mind that at one point in the bad old days, Jim and I couldn't even stand near each other at the kids' games, and now we were working together, getting along fine.

We had lunch at a cozy neighborhood restaurant and then drove to Home Depot and back to the apartment, which she is sharing with two others. When Joe and I went out for coffee, I found a little plant for her bookshelf. The bed made and the curtains hung, the small room started to look like a new home for the baby of the family, the quiet one who has become the family adventurer.

When we said our good-byes, my eyes filled with tears. 

But now that she's closer we can see more plays...and I might even have a new place to stay.