Friday, March 20, 2020

Hanging in a thread

Road all to myself on cloudy day run
When I got worried during cancer treatment @danafarber, my nurse, Vytas, wld call me a Nervous Nellie & say "They'll figure it out." Believing him, I relaxed a little. Without the same confidence in our great leader, there is no such balm w/ #coronavirus.

I'm not a big tweeter but I did want to share this thought. I remember Vytas sitting on the edge of my bed and saying "They'll figure it out." Vytas was a cancer survivor himself (lymphoma) and was one of us. He followed me wherever I went, starting from my diagnosis in 2003. I can't believe he has been gone for 10 years. He died not from lymphoma but from a heart problem resulting from the radiation he received. In looking him up to spark my memory about the year of his death, I came upon something I wrote. It was on Brigham and Women's Hospital's newsletter for nurses. The remembrance said,

A Newton resident, Mr. Durickas dedicated himself to patients, even when he struggled with his own health issues. His caring personality often made an impact on patients. One of those former patients is Ronni Gordon, a writer who blogs about running and battling with leukemia. She recently wrote of her memories of Mr. Durickas.
“Over many years and through four bone marrow transplants, he always took that extra step. His kindness and sense of humor helped me get through many tough spots,” she wrote. “I’d panic over some new detour on the road to recovery, and he’d calm me down with a mix of knowledge, a talent for putting things in perspective, and, always, something funny.”

The nation needs a Vytas, and we don't have one. Couldn't we even have someone with at least a voice that isn't grating, someone with a calm tone, such as I heard in the message that my Congressman, Richie Neal, left on my answering machine in giving a heads-up to an upcoming informational call that he would be giving? This article in The Atlantic, "No Empathy, Only Anger," , lays out the tone and substance of the administration's failure. The news is so all around bad, from two Republican senators dumping their stocks before the economy went bad, to mismanagement and missed opportunities, that following the news is sickening, but not following it is not in my nature. I am trying to limit as much as I can. For example, last night I didn't read or watch one bit of news, instead catching up on Grace and Frankie.

Is it lunch time?
Given absence of guidance from the top, states, localities, communities, and individuals and friends and family are trying to fill in the gap. Kudos to Serenity Yoga (and others) for setting up a virtual studio. I did my first class this morning via my laptop and enjoyed connecting with others and keeping up my practice. Afterwards, I had a FaceTime coffee chat with a fellow yogini. Last week four friends and I tried to share a virtual cocktail hour. There were some technical difficulties, but I guess we'll have to learn.

I've been to the supermarket twice and hope to not go again until this clears up. I wore a mask and gloves, but the mask kept slipping, and as I tried to fix it behind my ear, I thought about how I should not be touching my hair. My friend the pharmacist said he thought I was OK, but the concern afterwards really dragged me down. I'm either going to use online means or go to River Valley Coop, which has started curbside pickup. THEN you read about how you have to wipe your groceries down (which I didn't do) because who knows who has touched what.

Also why are people hoarding Hellman's mayonnaise?

My kitchen is ready to be painted, but I'm not sure if I should let the painter in. As of this writing I have said to put a pause on all of the house repairs. It's not finished but it's good enough. I do go back and forth on the kitchen. I would like to have the kitchen back...

It has been pointed out to me that being quarantined is nothing new to me; I learned how to live with limitations after each of my four stem cell transplants. But at least then I knew what the enemy was. In the case of the virus there is so much uncertainty.

There is still dog walking and following the dog around the house taking photos of her or getting a hug. On one of the nice days this week, I played singles with the BF. I evened out the playing field by making up rules as we went along, such as if he hit a serve that I couldn't return, I got a mulligan. (I gave him some second chances too!)

Absent tennis at the club, I am trying to do a little more running. The other day, I ran four (up and down hills) and walked two. It's not easy to get out the door like it was in the old days, but it's doable, and once I get going I'm grateful for it. I can almost forget what a mess we're in.

Friday, March 13, 2020

Worried about virus, happy that my kitchen is coming along

Hey, I have my kitchen back... sort of, that is. 

The barrier separating the dining area from the kitchen came down today. It looks strange with no furniture in it! Also it echos. The walls are primed and ready for paint. Some people volunteered to help me (thanks Jen and Mimi) but when I went into the paint store, I gravitated to the color that I think I want, natural linen. I thought of going back to get some other samples but sometimes the first thing you choose is the one that you end up liking the most, and also, the virus. (As in, not spending too much time shopping, but I went to the Big Y to pick up a prescription today and ended up there for an hour because it was mobbed with people preparing for what they seem to think is the apocalypse. And no hand sanitizer...)

Lower down in my last post you can see what it looked like just a week ago. 

Today I have a story up about the uncertainty facing "older people" who are most at risk. It is featured on Next Avenue, the PBS-affiliated website for people 50 and older. The editor wanted it in two days, and I am pleased to say that I have not forgotten how to write on deadline, thanks to my training in the daily news biz. 

The story started like so: The other night I was so worried about the coronavirus that I took five milligrams of Ativan, but all it did was make me feel hung over. The next day, I ran four miles and walked another two. Neither helped.

“I shall die of eating an unwashed grape,” I said to my dog in my best Blanche DuBois impression.

I survived relapsed leukemia — with an apparent record of four stem cell transplants — and am worried that after all I’ve been through, COVID-19 will be the end of me. None of the available information has allayed my confusion and concern over who exactly is at the highest risk. You hear that the high-risk group is people over 60, then, people 70 and older. Or those with high blood pressure. I concluded that I was going to skip everything but tennis, but, after I went to tennis (where there were many people including the doctor who diagnosed me), I felt that I shouldn't have done it, and I think I'm going to have to look for subs.

You can read the story here. 

On to other topics, because although it seems like there are no other topics besides the virus, there are. 

That redhead in the trippy Celebrity Cruises commercial is sure getting a lot of sun. I thought it might be a commercial for skin cancer. I wrote about some of the weird qualities of the commercial   this post  . Until I had so much trouble with skin cancer, I didn't see so many things through its lens.

For the same website, I also wrote about the ways in which I've been lucky. I didn't write about this, but today, Friday the 13th, is lucky for me, because Ben, my first born, was born on a Friday the 13th. I wrote, "Nobody should say you’re lucky to get cancer, but luck is a matter of degree. For example, an acute myeloid leukemia (AML) patient like myself is lucky compared to one who got the blood cancer before stem cell transplants became common practice. In great part, we owe our survival to the so-called Father of Bone Marrow Transplantation, Harvard-trained researcher E. Donnall Thomas, who I wrote about in a piece on what it’s like to be a chimera, a person with two types of DNA. In 1957, Thomas published a report of a new approach to blood cancer treatment: radiation and chemotherapy followed by the intravenous infusion of bone marrow.

Thursday, March 5, 2020

From a sunset on the beach to screaming pain on my lips

Scaffolding on the house
I went from watching a sunset on the beach to having a screaming pain around my lips. Waaaaaa.

It’s the second time it has happened. I applied a chemotherapy cream, 5-fluorouracil, combined with a synthetic form of vitamin Dcalled calcipotriol. It's a relatively new treatment for early skin cancers. Most people know the chemo cream by its trade name, Efudex. Someone in a Facebook group for Efudex users said the calcipotriol gives the former super powers. The purpose was to treat one squamous cell cancer on my temple and other pre-cancers, or actinic keratoses, on my face. It lights up the cancers and pre-cancers and burns them off. I put it all over my face, as instructed, because I didn’t know what was lurking. The sides of my lips went berserk. The left is worse than the right. It burns like crazy. The inflamed area extends onto my skin, creating the effect of a clown mouth.

From when it happened before, I had an anti-fungal cream. I’m not sure why that is supposed to work, but that is what I had. I put it on. By chance I had a checkup with my internist. She said to use a prescription antibiotic instead. I got it and put it on. Then, as directed, I sent a photo to the Mohs surgeon in Boston. He called back and said to use the anti fungal and not the antibiotic. Also he said I could add Vaseline. It might help to stop the chemo cream combination but he wants me to use it a few more days because the squamous cell cancer on my temple isn't red enough.

Man in the kitchen
I’m also treating my hands. This is frustrating. I have treated them before, they get better, and then the actinic keratoses come back. Some people won’t do it. I have a squamous cell cancer on my thumb, so I have to do it although I don’t have to do the full hand.

Today I’m going to Dana-Farber for the light therapy (ECP) and I’ll be interested in hearing what the people at the Kraft Family Blood Donor Center say.

Work on my house has been mostly on the outside, to get the structure safe. On the inside, it has been demolition but not construction. Today, a carpenter finally came and worked on putting the kitchen back together. He said it shouldn’t take too long. I may have this wrong, but I think that when reading Virginia Woolf’s The Waves, I was struck by how comforting she found the sound of the workmen to be. I have the opposite impression. The pounding and drilling gives me a headache. Sometimes I go and work elsewhere. It hasn’t seemed like enough progress. But when I went and looked around the outside, I saw that it really was coming along.

I was sure lucky that the tree hit the garage first.

You might think I wouldn’t consider myself lucky in general, given all the things that have happened to me, but of course luck is a matter of degree. For example, if I had gotten chronic myeloid leukemia (which doesn’t go away) instead of the acute kind, I would still be dealing with it to this day.

On the blog I have shared some of my posts for a site called Health-Union. Recently I wrote one about luck.

It began, “Nobody should say you’re lucky to get cancer, but luck is a matter of degree. For example, an acute myeloid leukemia (AML) patient like myself is lucky compared to one who got the blood cancer before stem cell transplants became common practice. In great part, we owe our survival to the so-called Father of Bone Marrow Transplantation, Harvard-trained researcher E. Donnall Thomas, who I wrote about in a piece on what it’s like to be a chimera, a person with two types of DNA.”

You can read the rest of the post here.

Saturday, February 29, 2020

California dreamin' (Part Two)

With Katie and Nancy on top of Coit Tower
You don’t want to use the word iconic lightly. I think though that it’s safe to use it for three places we went in the San Francisco area.

1: Golden Gate Bridge (needs no explanation.)
2: Muir Woods, the National Monument that is a redwood sanctuary with coast redwoods more than 250 feet high and 400 to 800 years old. The East Bay Times summarizes: “ The National Park Service preserves “that singular icon of Northern California, the coast redwood.”
3. Coit Tower, a top of Telegraph Hill. (Just to make sure I wasn’t exaggerating, I looked it up and read, “Coit Tower is an iconic site on the San Francisco skyline.”

Nancy planned a whole itinerary, starting with my arrival on last Thursday, to which we adhered pretty closely except for substituting more time outside instead of the Legion of Honor Museum. I had been to Coit Tower, but this was an exceptionally interesting visit because she booked a private tour, in which our guide explained the history behind the Depression-era murals.

Atop Coit Tower
A sign at the tower explains, “In early 1934, the building became the pilot project of the Public Works of Art Project (PWAP), and offshoot of the Civil Works Administration, one of the ‘alphabet soup’ of federal agencies that put people to work during the Depression. (Our guide said it owes a lot to Eleanor Roosevelt.)
…Many of the most important Bay Area artists of the time were hired to create the artwork. The twenty-six project artists worked together to support the unified theme of ‘Aspects of Life in California, 1934′, depicting scenes of agriculture, education, urban and rural life, and New Deal idealism. 

One of my favorites: life in a newspaper office.

Afterwards, we had lunch at the Saint Francis Yacht Club, where Nancy is a member, and walked along the beach towards the Golden Gate Bridge. It didn’t look real, but it was. I don’t know how many times I should say beautiful, but that’s what it is. It was sunny and in the 60s, a balm to East Coasters who had gone West out of the cold.

Lunch in the trees

Our Airbnb was in the town of Tiburon. I got in a jog of two and a half miles, part of it along the water, and met Nancy for coffee. We had a view of the water. I took a video of the ferry coming in. I could do all of that some more.

After checking out of the Airbnb, on the last day, we drove up into the mountains.

Tree hugger
We had lunch on the deck of the Mountain Home Inn, along the Mt. Tamalpais ridgeline, which felt like we were floating in the trees. Then it was on to Muir Woods, and then on to get a snack at the Parkside Café before a sunset walk along Stinson Beach. We found so many perfect sand dollars that my traveling companion wondered if they were real!

The joy of being there was compounded by watching little Goldie’s joy in everything. I treasured watching her and Katie play along the shoreline. Serena is doing such a good job with her. I got a kick out of how she kept calling us Cousin Ronni and Cousin Katie. Little baby Leo is of course cute too of course and seems to be always smiling.

Little cutie
Then it was on to the airport for Katie’s 8:43 p.m. flight and my flight at 10:10 p.m.

It’s hard to believe we squeezed so much into a few days, but we got it all in.

I arrived in Boston at 4 a.m./7 a.m… and was exhausted.

Driving home, I had to stop twice. It took days to get over it. I might not take the Red Eye again. I only slept a little. But if we hadn’t taken it, then we would have missed the magical day we had on Monday. The better way might have been to do what we did last year when we went to Jeremy and Karma’s wedding, leaving around 2 p.m.

Stinson Beach
As I write this a few days later I have finally recovered. I’m sad about it being over and concerned that somehow I got exposed to the Coronavirus. I asked my pharmacist if being on one milligram of prednisone counts as being immunosuppressed, and he said no. For good measure, I asked my nurse practitioner, Melissa, and she said the same. She said she was glad I went to California.

I think that to keep my mind off of it, I’m going to make a photo book. That way I can immerse myself in the love, and the wonder of it all, and look at the smiling faces and try not to get swallowed up in the hysteria. I talked to a friend about the worry and she said it doesn’t do any good to look back. It does good when looking back at the good part but not when second guessing. I have a tickle in my throat and am trying not to go overboard with it. My imagination helps in my writing but not when I apply it to myself and my symptoms. 

Saturday, February 22, 2020

California dreamin' (Part One)

View from hill walk near cousin's house in East Bay area

Chaska and Jason
I wanted to do something with Katie, and although she only had a short time, we decided to go to California. Because, why not? There are actually good reasons, which include seeing cousins and going to a special performance by Raining Jane and Jason Mraz in Santa Rosa. The concert was a makeup after a cancellation in October, due to the fires and fear for patron safety.

Of course, because I am who I am, meaning a complicated case, I worried about flying, due to flu and colds in general and Coronoavirus in particular. My pharmacist said, “Don’t go.” Then he said to go but to wear a heavy-duty mask, the kind they use for compounding, so he gave me one. My nurse at ECP, at Dana-Farber, said to wear one of the more thin masks. I took both.

With Katie and Chaska
I looked up whether to wear a mask while traveling, and the answer that I found was no. On the plane from Boston, I put on the heavy-duty one and couldn’t breathe. I called my friend Margaret while I was waiting for takeoff. “Put on the mask,” she said. (The reason for the concern is that prednisone is an immune system suppressant. ) Then the flight attendant said that she heard the only people who need to wear them are sick people, so as not to spread germs. The mask-wearing didn’t last long.

Family brunch
I was at a window seat, and my main problem was the guy on the aisle, who said, “Jesus Christ” when I got up to go to the bathroom. I told the flight attendant. She said then he shouldn’t have gotten the aisle seat. And she said I should go four times. I went three. Good for them to keep serving water. But duh, then you have to pee. I thought of saying something but didn’t.

The same day, Thursday, I had a beautiful day with my cousin Nancy. We went straight to a restaurant called Fish, in Sausalito, on the water. Then we wandered around Mill Valley, where she lives, and went to a yoga class. I spent the night at my cousin Wendy’s house in El Cerrito. In the morning we took a hill walk with a beautiful view. It’s crazy how it is part spring, part summer here. Part of it is due to climate change and part of it is just the way it usually is.

Cuteness in the park (Katie and Goldie)
Last night was the concert, preceded by dinner at an Italian restaurant in Santa Rosa, longtime residence of Peanuts creator Charles Schultz. At first I didn’t know what my cousin Nancy was talking about when she said she had parked near Woodstock. Then when I got there I saw that it was a statue of the yellow bird from Peanuts. The concert was fabulous. It is something else to be related to a rock star who is gorgeous inside and out. I love all the band members, each complementing the other.

Serena and Goldie
Today we had a family brunch hosted by Wendy and Mark, followed by a walk in the park. Katie, Goldie and I did yoga on the grass. It was great to catch up with the older cousins and play with the little ones. The group photo, with Jeremy in the back, holding Goldie, reminded me of the one at Atlantic Beach. In it, Bob stood in the back holding Katie, who was just a baby. Now she is my playmate and friend, and I am so happy to be spending time with her in this beautiful place. I feel land-locked where I live, though I am lucky to be relatively close to the water. Still, all my senses and soul drank in the water when afterwards we walked alongside the water in and around Tiburon, where we are staying at an Airbnb.

The view from our Airbnb and the area around it is spectacular. We walked along the water and took it all in. More adventures to come.