Thoughts on the New Year

I almost forgot how to start a new post. At the Canoe Club on a beautiful day back in the summer, Donna said don’t stop the blog. I have to do what she says, as in “yours” in tennis, but I am only kidding about that and am giving it a try. 

Funny how things work out. 

I started this way back when Delta got worse, school for Nell was going to start, and Ben understandably didn’t want to take a chance with Cape trip #2. Joe also couldn’t come. So although we missed them, Diane, David, Katie and I had a lovely weekend. We went on the boat, which we might not have done if the whole crew was there. 

 My nose continues to be a pain. I had a skin cancer removed from the top of my head, and while I was lying there, at the Mohs Surgery Center in Jamaica Plain, the doctor said it (my nose) could use some dermabrasion and went after it with a sand papery thing. Now I am dealing with THAT healing. To finish it off, I apparently need laser. At 7 a.m. in Boston. At least I can get a little something out of these things. I wrote about how hard it is to bandage your nose, like so: Nose bandaging not my speciality.

It's funny, not ha ha funny, just strange, that as a blood cancer survivor I deal mostly with skin cancer, which I write about here.

It was also hard to bandage a wound on my head, as you can imagine. Boyfriend rigged something up with gauze, tape, and three hair clips. Donna and I made it to the US Open. That seems like so long ago. There was no bus, so I drove. Highlight of the drive might have been the pit stop on a sloping bank alongside the river just before we hit the Whitestone Bridge. Only kidding, I think. We navigated the grounds like pros, unlike in our first year, and saw women’s doubles up close, as well as men’s singles and a short trip to our nosebleed seats in Ashe, all the while juggling our Honey Deuce cocktail in the souvenir glass with the winners on it.

I did the Hot Chocolate Run for Safe Passage with my friend Amy Willard. We chatted most of the way and didn't do it for time. It was great to be with a group of runners again. Since it was outside, I wasn't worried about the virus. We kept our masks on except for the photo. It is so fun and festive and for a great cause.

I waited so long to finish this that now we are dealing with Omicron. I won't go backwards on some things, such as playing tennis indoors, which I wouldn't do last year when unvaccinated. Though I have to say that after having no problems playing all summer on the clay, my feet and to some little extent my right knee, are speaking to me with all of this playing on hard courts in Enfield and (still outside the other day in the cold) on the hard courts at the Canoe Club. 

On New Year's Day it is hard to know what to make of things. Someone I know asked on Twitter how it was possible to be optimistic about the coming year, what with climate change, the virus, and the anti-vaxxers giving the plague new ways of spreading. I agree that it is hard and infuriating. It is hard not to get my blood pressure up, when they parade around with signs along the lines of "don't tell me what to do with my body" yet will turn around and tell a woman what to do with her body. Big sigh.

But as for the positive: This time last year, we didn't have the vaccine. I couldn't let anyone in my house, and even when walking outside with Katie, I had to be careful not to wander into her pathway, as I am wont to do. This time last year, the grandkids couldn't have visited as they did the other day. We wouldn't have been able to play with the toys that I held onto from when my kids were young. We couldn't have had lunch. We might still have been able to take the "nature walk" that we took over at the college, but then we wouldn't have been able to come in and have hot chocolate and cookies.

In the old days back at the paper (s), I might not have interviewed my friends, but my sister/friend Margaret fit so will into the theme of pandemic pivots, which I wrote about for PBS's Next Avenue, that I had to feature her. I was honored that she used the photo on her Christmas card. 

Maddie is almost 15.  I remember when our dog Sam was this old and would be sleeping in the pool of light beneath the living room window, on the blue carpet, and we would check to see if he was breathing. Now I check her that way. She has mostly stopped playing with her toys but she really likes this snowman that Jane gave her for Christmas. As always, she seems annoyed when I take her photo. 

Dentist and dermatologists and a trip to Boston, oh my

Silverwood Terrace scenery

Well I made an appointment to go to the dentist. That is happening today. They said people are coming in. At the same time as getting my chipped tooth fixed, I might gather up the courage to say I lost my mouth guard. I must have thrown it in the wash with the sheets but I don't know what happened from there. Or maybe the gremlin took it.

But last week, instead of going to the dentist, I went to the dermatologist...in Boston.

This happened in the strangest way. There was a little dark, raised spot near my knee. To be honest, in a twisted effort to prove to myself that it wasn't melanoma, because it was darker than my squamous cell cancers, I picked at it. Yes, I know, that is weird and gross. I got left with a little scab that didn't go away. You can STOP here if you don't want any more details.

To continue, though, as I have said, I have three major dermatologists, and even more, if you count the ones I have seen when my regular ones aren't available. I showed it to the people at Mohs surgery back in the real world before the pandemic, and one of the doctors there said it just looked like a scab. Next, I had a Face Time appointment with one of my other dermatologists. She said that if I was coming in, she would biopsy it, but since nobody was going in for this kind of thing, we would just leave it alone. The Mohs people like to be in on the loop, and asked to see a photo. So I sent them a photo. They day that they got it – last Tuesday – I got a call from a nurse at the office. She said to come in the next day to get it biopsied. COME IN TO BOSTON? I asked. Yes, she said, come in at 3 p.m.

Naturally I was hesitant, as Boston is a hotspot. My friendly personal chauffeur was also not hot on the idea. He didn't want me to go. I do everything they tell me to do, so I was going to go, one way or another. It was out of the question to contact the crazy driver pool. I asked Katie. She said she would do it but that would undo all the work we have done in seeing each other at a social distance, because we're not in the same germ circle. Duh. I thought of driving myself, but I was going to get an excision, and a stitch, in my knee, so that wouldn't have been a good idea. My friendly driver took me.

The doctor was also going to do something about the non-healing spot on my thumb. So there would probably be two biopsies.

I made a phone call to a local dermatologist. I could come in but it would be a week before I could get an appointment. When things settle down I'm going to see if I can get a dermatologist at Cooley Dickinson, since it is in the same network, Partners, as Brigham and Women's.

Meanwhile, I sent a photo to my regular dermatologist and gave her the news that I was going in for a biopsy. She said it didn't look like anything serious. Still, my mind raced. I thought that someone telling me to go into Boston, on a day's notice, meant that they suspected something serious.

So the next day, off we went to Faulkner Hospital, in Jamaica Plain.

It was an easy drive, and quiet at the hospital. Someone came out from behind a partition and took my temperature via my forehead. Then another person passed me a mask on a long stick. I took off my mast and put on the new one. I was in the elevator with only one other person. The office was quiet, with nobody in the waiting room. The nurse said they were seeing about five people a day.

When Dr. Schmults came in and looked at the leg, she said it didn't look serious. She said some word that I can't remember, but after she biopsied it she said it looked either like a seborrheic keratosis or a mole that was traumatized. (Did she say a traumatized mole? I don't remember. Flash back to the picking...) She also took a nice little piece out of the knuckle on my thumb. When she came at me with the needle, I said the thumb was one of my least favorite places for anesthesia, due to the lack of fat. But I had forgotten how good she is at it. She does tiny little jabs instead of one big needle, so that after the first one you don't really feel it.

I haven't gotten the results.

Happy asparagus

The knee has one dissolving stitch in it, but the thumb doesn't have anything. It's hard to keep it dry, with all the hand washing. Yesterday it didn't look so good, so I put antibiotic ointment on it and kept making sure to put a dry bandage on it.

The knee didn't hurt at all afterwards. The thumb hurt a lot. I had to lay off typing for a day.

A couple of days later a went for a run. Maybe I shouldn't have done it, because it was too late in the day when I decided that I was up for it. It was hot, and I was dragging. Yesterday I decided that it was better to do a shorter distance well than to do a longer distance poorly.

The morning walks are nice. I go along the golf course and look at the trees in bloom. The golfers are out, making me wonder when tennis will come back. In tennis, there is concern about touching a ball that someone else has touched, and if the person has the virus without knowing it, then you getting it from the ball. Some people are saying to maybe just play singles. One friend said she heard that you mark your own balls and only touch those. It seems a little far fetched. A friend from the Canoe Club sent a funny video of different ways that people are playing tennis at home. We could hit a ball around in my driveway, but somehow the scenery there, with the dumpster and all, doesn't inspire me to want to do it.


I bought some plants from an outdoor sale on Route 47. My friend isn't happy about going around people, but I have to do some things, though nothing inside. I feel that outside is safe if people are wearing masks and it is not crowded. It fit all these criteria. On the way back, I passed several asparagus stands. I got a bunch from a wagon in front of a farmhouse. When I drove into the back to turn around, an old chocolate Lab named Bailey greeted me. A kid came out of the barn with two kittens in his arms. It felt normal to choose from some bunches of asparagus on the wagon and put my money in the box.

Little boosts.

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

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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.

It's about the dermatology, stupid

Biopsied thumb

Not too long ago, I had two dermatologists, but now I seem to have accumulated two more, some of them giving me conflicting information. This has left me farblonjet, not knowing which way to turn.

They are Dr. Lin, my primary dermatologist; Dr. Liu, the one who sees me for graft vs. host disease of the skin; Dr. Cornejo, who I saw when I was worried about a spot and couldn’t get in to see the other two; and Dr. Schmults, the Mohs surgeon.

Dr. Cornejo told me after three biopsy results that I needed Mohs surgery on all three. But when I went for the Mohs on Tuesday, Dr. Schmults said she only needed to do one; she told me to apply a topical chemotherapy combination to the other two spots, one on my cheekbone and the other on the top of my neck, at my hairline.

Meanwhile, when I saw Dr. Lin on Jan. 28^th, she said that she thought my face would benefit from a return to the face fry, or more formally, PDT, photo dynamic therapy, which I thought was a thing of the past. Her scheduler called me up to book it. But before I had a chance to return that call, I saw Dr. Schmults, who said to apply the chemo cream to my face and don’t do the PDT. I think Dr. Schmults, the surgeon, wins out on this one. I hope I am right because I would rather have the cream than the burning light. I think I will have to call Dr. Lin’s office to get this straightened out.

I had back-to-back weeks of dermatology appointments.

For the one on Jan. 28^th, I had neglected to get the PT1 for the address where I was going. That is the form that needs to be filled out for my MassHealth transportation, aka, the crazy driver pool. The address, 221 Longwood, Boston, is very close to Dana-Farber, for which I do have the PT1. I figured I would get the ride to Dana-Farber and walk.

In a book I am reading, the narrator calls her partner The Boyfriend. I am going to try it on but probably only use it once because in the book, Maybe You Should Talk to Someone, things have not gone well with The Boyfriend, and I don’t want to jinx myself. In any case, The Boyfriend would have taken me but he was already taking me the next week for the Mohs. Also I knew it wasn’t a good day for him, and I didn't want him to spend it in a dermatologist's office.

Not knowing how long the visit would take, for a 2:45 appointment, I told the driver to get me at 4:30 for the ride home. Because I don’t trust my sense of direction, when I got to Dana-Farber at 2:15, I put the address in my phone. It was raining. At some point when I was heading down Longwood, I realized I had done it again. “It” being that I was heading for 221 Longwood in Brookline, not Boston. I don't know how I did that with the phone in my hand.

I had already done this once, on a day that I had driven myself, arriving so late, once I figured it out, for my appointment at the right Longwood that I almost wasn’t seen. (The receptionist started to turn me away that first time but I caught Dr. Lin's eye as she was coming out of a room, and she had pity on me when she saw a tear in my eye.)

For the Jan. 28th visit, I reversed course and ran through the rain. I was 15 minutes late. For an office that often makes me wait at least an hour, that didn’t seem bad. A guy at the desk said it would be OK. Apparently it wasn’t. After I waited almost an hour, I asked what gave. A different person said that since I was late, I would have to wait until 5:30. I explained about the ride, bla bla bla, and they fit me in…around 5. The driver kept calling. Then his dispatcher called. I said I couldn’t help it and I hoped he wouldn’t leave without me. It was my first time back with the driver of the car in the car crash. The company kind of owed it to me to get me home safely.

This is the appointment where Dr. Lin said that I should get the face fry again. Not only that, but she wanted to use a stronger red light, not a blue light. Among the activities were a biopsy on a tiny hole on the knuckle of my thumb. The hole has been there so long I lost track.

The resident, or maybe it was fellow, did the biopsy. The biopsy itself didn’t hurt, but the needle in my thumb killed. There were a few extra people in the room. I don’t remember who did what. But one of them zapped some precancerous spots. (Zapped = performed cryosurgery.) She did such a “hard freeze” on my ring finger that the blister looked like the Astrodome. It hasn’t healed, and I am worried that it might be infected. I got another one on my cheek and several on my chest.

While the resident (or fellow) jabbed me with the anesthesia, Dr. Lin rubbed my back. She is a sweetie. We go way back, far enough to have discussed many things. “How’s the guy?” she asked. “Good,” I said.

“The guy” drove me on Tuesday for the Mohs, which, as I said, turned out to be a single and not a triple. It is in a strange place, at the edge of the top of my cheekbone, bordering my ear. I have had a hard time keeping the band aid on for a week. I have to change it every night, and it is not easy to cut a piece of gauze into the right shape and tape it on so it doesn’t fall off. One morning it had dislodged while I was sleeping, so I had to put it on all over again. I had a few choice words.

Inside my room

Luckily I don’t have to go back to Boston to get the stitches out. When I told someone that they sent me home with a suture removal kit, the person asked if it was a DIY project. No it isn’t. A nurse friend does it for me when there aren’t too many stitches. When there are more, I go to my internist. My nurse friend will be taking them out for me on Tuesday.

While I was at Dr. Schmults’s office, they read the biopsy report on the thumb. It is another squamous cell carcinoma, albeit a tiny one, and I have instructions to treat it when I do both hands, starting next month.

My house is coming along, post tree-fall. They have re-shingled the garage roof and begun taking down damaged parts of the kitchen and bedroom. I'm getting used to the little cubby hole in which I'm sleeping. (It was a kids' room that I never got around to fixing up. Procrastination pays.) It took me a while to stop being disoriented when I woke up.

In other news, here's something I wrote about scars being a roadmap of where we've been. Thanks to my cousin Bob for that one.

Mishaps in the house, more messes on my skin

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New sleeping quarters

My squamous cell radar, like my New York parking radar, continues to point me to the right spot.

Which is to say that after I realized that squamous cell cancers in my case at least are areas that won’t stop flaking, I’ve recognized the difference between dry skin and something suspicious. Unconsciously while I was writing (or pondering), I rubbed my finger along an area at the top of my cheekbone near my ear – the sideburn area – and came away with blood. This was a while ago. I forgot about it and then did it again more recently and realized I was picking at some spots that were flaking.

I also felt something scaly behind my head, at the bottom of my hairline.

This happened a few months ago and so I made a dermatology appointment in Boston. Dermatology appointments are not the easiest to get. I went Monday and sure enough ended up with four biopsies. Three for the little cluster near my ear and one down at the back of my head. I assume that I will end up with at least one Mohs. Which means missing a couple of weeks of tennis, sigh.

The after visit summary sounds sort of creepy:

• Neoplasm of uncertain behavior of skin
• Seborrheic dermatitis
• Actinic keratosis
• Personal history of other malignant neoplasm of skin

Actually a skin neoplasm is just an unusual growth that could be cancerous but also noncancerous.  Those stupid actinic keratosis are red spots that have reappeared on my hands and arms. They could be precancerous. I’m supposed to retreat them with a chemo cream combination. I feel like I already did that. Because I did, several times. You are supposed to wrap your hands up in Saran Wrap or some other but I told the doc that was very hard to do, and she agreed. Wearing purple exam gloves to bed is the next bed option. It is supposed to turn the spots bright red and since I'm doing some holiday visiting, I'm not quite ready to do it.

Here's something I wrote about a pill that is supposed to cut down on skin cancer incidence. 

Usually I try to combine dermatology with something else, but the appointments are hard to get – I couldn’t even get one with my regular doctor – so I took a “stand-alone.” It was kind of silly because I also went on Friday, for ECP (the light therapy), which I had absentmindedly changed from Thursday because I thought we had book group Thursday, which is our usual day. It had said right in the emails that we were doing it Friday for our holiday party, but despite telling myself repeatedly to write things down, I didn’t do it. So I went down to Jo’s on Thursday and was uncharacteristically early, as in, a whole day early.

 Luckily I made an early appointment on Friday, 1 p.m., so despite getting caught in Friday traffic, I made it to the meeting almost on time.

Ooops!

It might sound like I’m launching into my version of Alexander and the Terrible, Horrible, No Good, Very Bad Day, or – take your pick – the dog ate my homework. Because Maddie decided she is done with stairs so we changed our routine, and this caused me to break my glasses. Not direct cause and effect, but you will see. She also decided she didn’t want to jump up on the couch. I remember when we wanted to keep her off, and now I’m sad for her that she can’t get up. In addition to glucosamine, I got her some CBD dog biscuits that seem to help; one night she even ran up the stairs. But that was the only time.

I got her a new big bed for the den. For our morning routine upstairs, I would lie down and put my glasses under my dresser and then snuggle with her, arm over paw, or paw over arm. When we changed to downstairs, I didn’t have a habitual place to put my glasses. I should have put them on top of something but instead I put them next to me…and rolled over onto them and heard a crack. Then I had to hold the broken glasses up to my eyes to find the spare pair. I ordered a new pair from Village Eye Care, at the Commons. I know you can get them cheaper on line or elsewhere, but I want to support my local business.

The doctor (my friend Steve Markow) came out to chat. I told him my eyes felt all squinty and dry. He went into the back and came out with some sample drops and put them in my eyes. We gave each other an update on our families and had a hug. You couldn’t get this if you ordered on line.

Yesterday at the end of the storm, with mush on the ground, Maddie and I walked to the corner and across the street. A man shouted out from a car, “Come on old lady, you can do it!” I said, “Are you talking to me?” He laughed and said, “No, the dog!”

Earlier in the day, when we were taking a walk down Sycamore Knolls, a car slowed down, and dog biscuits flew out the window. It took me a minute to realize that it was Bert Willey, my painter. A few got lost in the snow, so he threw out another. Then she found the rest in the snow.

 Guys in cars, talking to dogs.