Saturday, March 28, 2020

When the days are almost normal

Snow falling from the roof
Some days are almost like a normal day. Such as today, which consisted of yoga, running, reading, writing, dog walking, and talking to friends and family. Except of course that they aren't.

Because for starters, yoga was by Zoom. I guess that a positive side of it is that you can "race" in with not even a minute to spare because it's in the living room. I'm learning new things, and since that might be good for the brain, that's a good thing too. I never knew anything about Zoom, and now I know how to use it and to unmute myself to tell the teacher the audio isn't coming through well and to say thank you and hello to my classmates at the end. Corey, the model who my  mother painted, keeps me company from the living room wall. Maddie seems to know when it's the end of the class because she wanders in and lies down next to me.

Yoga teacher on coffee table
I didn't know about Instagram Live and now Nell's 12:30 story time is one of the highlights of the day. Ben and Meghan are doing a great job of keeping her connected to the outside world by doing things like this.

She loves it when her fans – and there are a lot of them – comment and send her emojis when she reads. Today she read from a watermelon book, and I sent her, drumroll, watermelons. It's interactive, almost as though she was in a class, because at the end she asks people questions, such as favorite colors from the story. She also has a special hello and good bye (friends and family) song. It has been so much fun! Did I tell you about the time I said I would never see my grandchildren? Yes I'm sure I did.
Backing up, I don't want to overuse the term PTSD, which I've already said I have, so I'll say "on edge" when it comes to house stuff. A week or so ago, when it snowed, I woke up in the middle of the night and heard a booming and crashing noise. I was only half awake. Part of me knew what it was, but part wasn't sure. I thought maybe it was another tree falling, or maybe Bigfoot. But I suspected that it was what it was: Snow sliding off the copper roof.

I haven't gone in any stores since doing it more than a week ago. It made me too anxious. I'm not even sure about getting take out but I think it might be OK. I did order pie from The Pie Bar, in Florence. They wrap it up and put it on a cart in front of the store. They also have drawn a line that is six feet away from the cart, so that people keep a safe distance. It isn't exactly mobbed in front of the store so I feel like it is a safe thing to do. It also helps local merchants and satisfies the urge for pie.

I also stumbled on exercise videos that Venus Williams is doing on her Instagram Live. I put some weights on the dining room floor and put my phone on the table. It was fun to see Serena join her in another frame. She uses water jugs and Prosecco bottles for weights. Sometimes her dog Harry says hello. It's a good diversion. But I think I felt a twinge trying to do some dead lifts. Then I remembered that a yoga teacher said not to do them if you don't have someone instructing you on good form. I bookmarked exercise videos that the Y sent so I might try to do those instead.

Also I have PT exercises to do and exercises that I still remember from my Livestrong class. The physical therapy exercises are supposed to strengthen my rhomboids, the theory being that the pain under my left shoulder blade results from a weakness in those rhomboids. I don't really get it, that's just what they told me, and so far it hasn't helped. It's a chronic problem. Sometimes it helps to put a therapy ball in the spot and lie down on the floor on top of it. Or get Katie or Joe to get at it. Massages make it go away but then it comes back. I have heard it's where a lot of people hold their tension.

I also have exercises from my Livestrong class to do. I'm like many people, I guess, in finding it easier to do exercises in a class. I can get out and go for a run or walk more easily than I can pick up weights. I might try to do a Zoom fitness class via the Y or try one of their "virtual fitness" videos. Since my kitchen is empty, I could use it as an exercise room and keep the living room for the yoga studio.

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.