2nd seder on Zoom and a sort of 10K

 

I ran a 10K!

No I didn't, but I looked at my mileage and it was 6.2 miles with a combination of dog walking, walking with a friend, and a few miles of jogging. 

I was so excited after the second dose of the vaccine that I went for a run. I felt better the first couple of days after and then on the third felt a little off...Just that feeling that you are fighting the flu. Hopefully it's a good sign.

The other day I went jogging before the rain and ended up being passed by a young guy who was really kicking up his heels. He sped by me. Harumph, I thought. Then I thought, wait, he's a small fraction of my age and most likely hasn't had four stem cell transplants.  And then also I don't think I ever had such good form. 

Once I got home, the good old negative self-talk kicked in again. I know that a loop that I like, up the Park Street hill with the Mount Holyoke lake on the left and back down on Morgan Street and going a little past my house on the way back, is about three miles. I got back and checked my phone (no Apple watch for me) and saw 2.9 miles. WHAT? I thought it was three...Well I walked around the house for a minute and then it was three. 

This is now and that was then...three miles isn't that bad and also better on my knee.

Nell at the Zoom seder

Last year, after our Zoom seder, we wondered if the next year Passover would be in person. 

Well, it wasn't. Thanks to Diane and David, though, we saw a lot of people, since their second Zoom seder had some 50 participants. The benefit is that you can have people in different time zones in the same place. The downside is that you can feel forlorn when "the meal is served" and everyone has disappeared. Last year, we got it together to all make dinner and eat together in our family Google Meet. This year for some reason none of us did. I got a chicken but didn't make it until later in the week. Boyfriend and I had leftovers by candlelight, and while he was heating things up I talked to Katie via FaceTime, since she shared my forlorn-ness. 

Six of us with expertise in illness and recovery read a little something about what we had learned. I don't know why I was nervous about doing it; it was all friends and family. I get nervous though in even this little bit of public speaking. I could have declined when David asked me to do it, but I figured that if I could face leukemia multiple times, I could do a little reading. 

Here's how I began it, with apologies to Joe and Diane:

I know a thing or two about how to not get out of a lockdown gracefully. For example, you don’t overestimate what you can do and you don’t get so flush with freedom that you go running and neglect to look where you’re going and trip over a root and crack your head. Then two weeks later you don’t forget that you are a little weak and get on a bike and fall off and crack your head again and get another concussion and stitches in the same eye that is still black and blue from the last time. 

It’s hard to avoid the temptation to rush back to normalcy but my most successful results came from being more deliberate and focused. 

But I have to say that now that I am two weeks post my second vaccine, I want to plan more than one thing. I haven't done it yet. I got a ride in a friend's car, and that was the most exciting thing so far. It's going to take time to inch back into normal life. 

Despite anxiety, finding a certain kind of rhythm

The other day when I learned of a COVID-19 death that came a little closer to home than others, I felt so sorry for the friend whose friend he was and for the community that lost him, I did what I used to do much more easily than I do now: I went for a longer run. (My former colleague Stephanie Barry wrote a beautiful tribute.)

Without thinking about what the total distance would be, or, more importantly, the hills that I would need to climb, I increased my loop to one that I used to do. While running home, UP the Route 116 hill from Mosier Street, I had mixed and conflicting feelings.

This was good! I had pulled a coping tactic out of my old toolbox.

This could be bad! I was huffing and puffing so much going up the hill that I worried if the exertion could hurt my immune system.

Diane and David leading the seder.

I was surprised that I had run six miles. Combined with the dog walking, it would be over seven for the day.

Something that seemed so simple, like going for a run, is now more complicated. You think you're doing something right but you can't be sure. Everyone is sharing new insights, new concerns. The answers can change in one day.

I worried when a friend had shared a story about being careful to keep a safe distance behind someone else who is running, because if they're infected, their sweat, or spit, could infect you.

Ben, Nell and Megan

But I think the running provides safe social distance because I'm not going where there are a lot of other people. If I see someone, I jump to the side or cross the street.

I hope we all don't end up anti social. On the other hand, maybe we'll be more social than ever, wanting to hug everyone.

A hiker friend asked on FB if you need to wear a mask if nobody is around. Some people said yes, but more said no. In an article, "Everyone Thinks They're Right About Face Masks, in The Atlantic, Ed Yong summarized why the situation is confusing (and also ripe for anyone with OCD).

"As the coronavirus pandemic continues, many people are now overthinking things they never used to think about at all. Can you go outside? What if you’re walking downwind of another person? What if you’re stuck waiting at a crosswalk and someone is there? What if you’re going for a run, and another runner is heading toward you, and the sidewalk is narrow? Suddenly, daily mundanities seem to demand strategy. Much of this confusion stems from the shifting conversation around the pandemic."

He asked an expert a question that I've been wondering about: "Is it irrational to hold your breath when another person walks past you and you don’t have enough space to move away?" She told him it wasn't irrational and she did it herself. “I don’t know if it makes a difference, but in theory it could. It’s like when you walk through a cigarette plume.”

Advice can be contradictory within the same news story. For example, in A User's Guide to Face Masks, in The New York Times, Tara Parker-Pope writes, "The recommendation is to wear a mask at all times in public spaces because we don’t know who has the virus and who doesn’t. It’s also more socially responsible to wear a mask, even if you’re outside." But almost in the next breath, she writes,  "In general, outdoor exercise, with or without a mask, seems to be safe, according to most experts."

Whose mat is it, anyway?

OK, at least for now, here is my plan. No mask while running. Yes mask when walking if there are people around.

Another activity that once seemed simple has now gotten complicated: going to the bakery and buying a loaf of bread (and a cookie.) The Hungry Ghost Bakery, in Northampton, has a good honor system set up. You walk up to a window, check out the chalk board to see what they have, place your order, drive off, and return to pay on via their website. I thought it was a fun little adventure. And the eight-grain bread was delish.

 Then a child of mine said it wasn't a good idea for me to do that. Some people are all in with takeout food while others are not. A story on NPR on whether it's safe to eat takeout  lays out a convincing case for why it IS safe; several infectious disease experts whom NPR spoke to concurred that research hasn't turned up any evidence of COVID-19 spreading through food.

Of course it is lucky to have such concerns when there are people who don't even have enough to eat.
And I am lucky to live in a beautiful, uncrowded part of the country.

And I have adapted to Zoom.

Zoom yoga, Zoom exercise classes, Zoom happy hour, and Zoom seder.
It was nice to see so many friends and relatives at the virtual seder, even if only on a screen.

Maddie seems to like to come over for at least part of my living room yoga. Sometimes she lies down and hogs (or rather dogs) the mat. I either accommodate or nudge her. It is interesting to look into other peoples' homes and to see their pets pop into the picture at random times. Kind of lightens things up. Which is welcome right now.

Two seders and an Easter dinner

Callen and Nell

I was a little under the weather leading up to Friday night, and I thought of not going to the home of my extended family, the Chipkins, for the first seder, but I rallied. We have shared many joyful celebrations and one of the worst nights of our lives. At the seder, someone almost snuck in the name of the Orange Monster (this is a hint regarding that bad night, in 2016,) but a murmur went up in the group to get us back on course. I'm always glad to be with this warm, welcoming family. It's a time of being grateful for many things, and the next day in South Hadley, we were all grateful that Joe took over in the kitchen at our seder after I got things going, because who knows, I might still be serving the potatoes. We have a wonderful tradition: Diane leading a beautiful seder, with contemporary tie-ins, and such must-haves as David's pot roast and Bob's booming baritone version of "Let my People Go." Having Nell and Callen "play" the piano was a joy. Playing with them was a joy. Even being able to get down on the floor and up from it is a joy, and in the theme of the on-and-off 10-year retrospective, here's a post about how I couldn't have done it when I was in the hospital, needing platelets and blood after one of many trips with Joe to the ER. It was a little less than four months after my fourth transplant. I had a fever and was worried about what might be coming down The Pike this time. It turned out to be another fungal ball. I wrote in this post, that after a little walk, "I got dizzy and felt like I might faint. I knew that my blood pressure had fallen. I made it back to my room, and when the nurse took my pressure (standing) it was 65/54. The episode earned me five hours of IV fluids."

Being under the weather now, as compared to then, is obviously no comparison. I've been dragging my feet, literally and figuratively, about doing The Gift of Life 5K in Boston this coming Sunday. Dragging literally, because it's hard to shake off the neuropathy-induced lead boot feeling, and figuratively, because I only signed up today. The Gift of Life is the organization that got me my donor; I signed up for the run last year but at the last minute went to Costa Rica, so when they asked again this year, it seemed like an important thing to do. To make a donation, please click here.

I haven't been running very much and want to get in some little runs before I do it. Yesterday I went a little less than three miles (OK, 2.7), then came back and jumped in the shower so that I could be ready for my next activity, a trip to Framingham for Easter dinner at the home of my Partner/Boyfriend/Honey/Beau's son. Could we take a vote? An Easter egg hunt awaited us. When we got back, we took Maddie for a nice walk.

Today I'm dragging and seem to have neglected the part about finishing the cleanup. Tomorrow is another day...

Earlier in the week, it was AML World Awareness Day, and I wrote about more than 15 years of knowing more than I never wanted to know on the topic.

The tears weren't (only) about the chairs

Seder table from each end (Mom wouldn't
 like the beer bottle).

When my father had a brain tumor that caused his eyesight to fade to the point that he couldn't read his beloved books, he would still say, "I can't complain."

And when my mother was bedridden in the last months of life due to the havoc lung cancer was wreaking on her body, she still had her sense of humor, raising her thin arm and saying, "It looks like a baseball bat."

They seem to have bequeathed me this quality: People say  they have never heard me complain about my health. I don't mean to suggest that I'm noble. I just never felt it was helpful.

But it has to come out somewhere.

For example, my feet: plantar fasciitis and a later issue, pain in my big toe. On a trip to the Grand Canyon many years ago, when heel pain caused me to turn back early on the walk down, I said that I was severely distressed about being held back by this stupid thing.

A friend said I complained about that more than I did about cancer.

Which brings me to my point from the seder we had one day early, almost a week ago already.

We figured that God would understand if we had it early due to people working and not living in the area. It was great to be together with family and extended family: twelve adults and two toddlers.

My sister does a beautiful job leading from an abbreviated family Haggadah. I read my father's favorite part, Psalm 114. A professor at heart, he loved pointing out the similies, metaphors, and other forms of speech. (The sea looked and fled/the Jordan turned back/for the mountains leaped like rams/the hills like lambs.)

Nell and Spencer

The reading is always emotional for me, and, depending on what is going on, after that fourth transplant, certain emotional situations are heightened.

A team table-setting effort (because Katie couldn't come) produced a good result. While I cooked a chicken, Joe did the rest; Diane and David brought brisket and appetizers, and everyone else pitched in.

Thinking about our parents and looking at the photo of my smiling mother arranging flowers probably laid the groundwork for the meltdown that happened when everyone had gone.

They did a good job of cleaning up most of it. Joe and Carly, who had come early to help, stayed a little longer. Everyone had a reason for leaving when they did. I knew this rationally, but a lot of things piled up to lead me to focus on something that now sounds silly: the four heavy chairs that needed to go back to the attic and five that needed to go back to the kitchen from the dining room. Obviously the chairs going to the kitchen weren't a problem, but lugging the others up the narrow attic stairway didn't seem like the right job for me.

(Apt analysis or psychobabble: I get an immense amount of help and love and support that I truly appreciate, but I ultimately I have to do the heavy lifting alone.)

I started to wash the delicate crystal wine glasses. One broke in the sink. I thought I better lie down for a few minutes and BREATHE. But I popped back up and looked around at the wine glasses and the dishes and the sink and stove that needed cleaning...and at the chairs.

Then it was pity party time complete with tears. I sent a text to a group of four about the chairs, then cried on and off through the next day in conversations with the ones to whom I had sent it, feeling sorry thatI had brought it up in at all and realizing that if I had felt compelled to say something, I shouldn't have done it via text.

It wasn't just about the furniture or the phone.

It was about missing my parents on this special holiday, about visions of my mother setting the table "just so," about being alone for the shopping and the end of the cleanup, about the three new squamous cell cancers (three extra after the ones I previously wrote about), about the one on my calf that stings all the time while I wait for my Mohs appointment Monday, and the one on the top of my head that will probably lead to shaving, about the GVHD of the skin causing my abdomen to feel like it has a tire around it, about my previously nice and now frequently swollen hands, about all the doctors' appointments wearing me down and running back and forth to Boston driven by drivers who may or may not be sane.

Between tennis the next day and the Chipkin Family seder the next night, I began to calm down. And in another day I had pulled myself together.

Mostly I am sanguine. In fact, when people ask how cancer has changed me, I am likely to say it has made me funnier.

Sometimes you have to laugh.

But sometimes you have to cry.

Bad day at the Big Y in South Hadley

Yesterday I brought my oxycodone prescription to the Big Y in South Hadley so I could take it with me to Boston for pre-medicating before my ECP. I do not want to haggle with anyone about the degree of my pain when they don't believe I know what I need.

 At the pharmacy they said to go shopping while it was getting filled. I wanted to get a head start on shopping for my seder because I will be out of commission with two days in Boston for alphabet soup. ECP (blood sucking) today and PDT (face frying to get rid of precancerous spots on face and neck) tomorrow.

 I looked in two places and discovered this Big Y has only have a fraction of the Passover food that you need. Since there are not that many Jews in South Hadley, we should have not that much food. I should have known better and gone to Stop and Shop.

When I went back to get the prescription, they said it would take a few more minutes for the pharmacist to check it. I balanced on my toes. The pharmacist came out and said that because of the state's new stricter rules on opiod prescribing, I needed to have a cancer diagnosis. It is part of federal and state efforts to limit the use of opiods for chronic pain. Because of the effect that Tylenol and NSAIDS on my system, my doctors prefer oxycodone for me in the case of severe pain. If I have a headache, I'm not going to pop an oxycodone. But if you saw how long my last prescription lasted, you would see that I use it sparingly. When she looked in the computer she couldn't even see the last time I had filled it. In any case...

If the scene at the pharmacy counter were a play by Harold Pinter, there would be a big pause. Well, there was a big pause. The pharmacist was apologetic. I said (duh) I've DO have a cancer diagnosis. I've been coming here for 13 years to get my cancer meds. My prescription came in on Dana-Farber CANCER Institute letterhead.

Under the new rules, it has to say what kind of cancer you had, or have. They went to call Melissa. Apparently I could get a smaller supply at that point or get the prescribed amount after she verified. I wanted the full amount so I went home. Then she called and said Melissa had verified I had AML. She said I could come back. By that point I was too tired. And also I wanted to watch the New York primary results come in. I'll have to go back today.

But first I'm going to play tennis and hopefully forget about it for an hour and a half on the courts.

A little of this and a little of that

The car successfully parked right across the street from Serena's, with no money needed for our whole three-day stay (I am still gloating), Katie and I proceeded to do a little of this and a little of that in New York.

On Monday I just curled up in my father's yellow chair – one of the many things that Serena has from our apartment – and made a cup of hot chocolate and read. Katie went to Brooklyn with her cousin Amanda, and I was happy to avoid the elements for the day. That night, we went to an overly-priced tapas restaurant, bringing back memories of Spain despite the bill.

On Tuesday, we had breakfast with our friend Harriet, who has a special connection with my mother,    and then walked to the Met. I had felt bad on our visit to Paris that we didn't have time to see the impressionist museums, but the museum visit on Tuesday made up for it. We walked through the impressionist rooms but spent most of our time at a special exhibition, Impressionism, Fashion and Modernity,  placing together important works of art and displays of fashions, showing the link between art and fashion during the 1860s and 1890s, when Paris was becoming the fashion capitol of the world.

You couldn't help but ooh and ah at the dresses in their glass cases and echo the women whispering, "I want that one."

Back in reality, we walked from the museum at 81st and Fifth down and across to 53rd and Lexington, where I met my friend Pam for coffee and Katie took the subway back "home." Our walk fit the description of "pounding the pavement," and right near the end my knee buckled. After that I had wanted to go running again, but Katie wisely gave me the lecture about not running if I am hurt, and I actually listened.

Tuesday, the second night of Passover when I might normally be going to a seder, I have to admit we went out for Italian food with Jeanne and Amanda. We loved being with them, and that was the most important thing.

Finally, on Wednesday, we went to a matinee of the Broadway show "Newsies." I was skeptical, but I ended up really liking the show, mostly the dancing by an incredibly talented cast of young actors who lept through the air, combining ballet with tap dancing and circus art.

Tomorrow, the only day we could get people together, I am doing a late seder. Actually, if I waited one more day, I would be in sync with the Orthodox Jews who observe Passover at the beginning and the end.

It will be nice for Katie to set the table with my mother's beautiful silver and have everyone gather around.