When I said 'nose,' maybe the dermatologist heard 'toes'

I went to Boston to the Mohs surgery center for what I thought would be removal of something on my nose. Instead, the doctor said to apply Efudex/calcipotriene, dermatology's "dynamic duo," to my face for five days, to in effect burn off this and other spots. Instead, she had the resident cut away part of my toenail and biopsy the dark area underneath it, "just to make sure it isn't melanoma." This was kind of as an aside. I have shown this gross big toe to many people who haven't had much to say about the dark area under it along one side. The consensus has been that it is scar tissue from my toe banging up against my shoe while running. She is the first person who seemed to give it a second thought.

When I said nose, maybe she heard toes...

The resident said not to worry. What, me worry? 

Here is something I wrote about being a worry wart.

It was not a pleasant experience and really hurt even more when the anesthesia wore off. I have not gotten the results yet. Boyfriend had to stand by when I took the Band Aid off in case I fell over in shock at the sight of it a partial toenail and hit my head.

A friend pointed out that it wasn't a good idea to write in October that my hypochondriac tendencies had led me to suspect pancreatic cancer...and then disappear.

I started a couple of times, as you can see if you scroll down to a post I wrote last month, and then I had blogger block, a version of writer's block that occurs when you are not sure why you are writing a blog. Also, I like to add photos, and my photos disappeared from my Mac. It took conversations with several Apple experts to get them back.

The pandemic has made it hard enough to concentrate on paid work. So I have put my energy into work that pays. I thought of revisiting the blog, however, when I wanted to look up one of the crazy things that happened to me and found it in my blog. It was the years that I had ferritin overload due to having so many blood transfusions, and having to drink a disgusting medicine, Exjade, to get the number to get down to normal. I found the blog, put in "ferritin," and voila, the posts came up. So maybe it is at least useful. Still, I got tired of hearing myself talk about myself. I'm not sure what I am going to do, but I thought I would at least check in and update.

Here is something about the increased mental health risks during the pandemic for those who have seasonal affective disorder, or SAD, and tips for coping. And here is another pandemic-related story, about the need for cancer treatments and screenings to continue. 

Here is what I started: 

Here we are with my Aunt Marge on her 100th birthday. I was very attached to her. My mother said that when I was three or so, and my head didn't reach the counter in a coffee shop, and my aunt hadn't gotten served, I said, as if out of nowhere, ""Please give my Aunt Marge  cup of coffee." 

When I moved to Western Mass for my job at the T-T (Transcript-Telegram), I stayed with her in Greenfield for a while. She was gracious, even when my dog Simon took a chomp at their little dog when he messed with Simon's food. Over the years when she lived in New York, I visited as much as I could. 

This photo  at left turned up during cleanup, in an envelope of old photos. Warren in front, my mother on the left, and Marge on the right...with the same sweet face.

As Bruce wrote in a beautiful tribute on Facebook, when Marge died on Oct. 19th, "she spent 101 years and 9 months on this planet and came in on a pandemic and left on a pandemic."

Bruce Byers photo, Lynne and Marge

Saying that I was sad when she died is an understatement. It is more than being the last link to the generation, to my mother. It is the love I felt for her. And not being able to go down to New York makes it worse. I have thought of doing it and would love to see Jeanne, Bruce, and Amanda, but it doesn't make sense now with the surge. 

The two of them were sooooo close. They called each other Bren. It came from an act that two sisters, Brenda and Cobina, did, which would start like this: "Brenda!" "What is it Cobina?" They apparently did this for a while and then when they forgot which one was which, they just simply called each other Bren.

Hopefully will all make it through and can get together in New York to celebrate a wonderful life. 

Here is another start. 

It sounds like an ordinary day...yoga, tennis, Odyssey bookstore on Small Business Saturday, coffee with a friend, dog walk... and in a way though part of it would have seemed abnormal pre-pandemic, it is the version that I have gotten used to. It was virtual yoga on the living room floor, for starters. Tennis, still at the Canoe Club, wasn't any different than in the past except for knowing that it is nearing the end because I decided not to go inside. At The Odyssey, one-way traffic, hand sanitizer, and a placard to take so they can keep track of, and limit, the number of people inside. And coffee sipped behind the mask, reminding me of how I did it after all of my transplants .

Mass confusion on the scheduling and dermatology front

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I thought I had two good things to report on the medical front but it turns out there is only one: I felt better as soon as I got my stitches out of my neck last week. I was free to go to tennis and do yoga without worrying about straining my neck, and I was pain free. Yay!

 The other – which would make a big deal in my life and give a break to my veins – was supposed to be switching to every three weeks, instead of two, for the trip to Dana-Farber for ECP, aka extracorporealphotopheresis for graft vs. host of the skin, aka the light therapy, aka the internal sunburn, for softening up my tightened skin. When I went last week, the Young Doctor, aka the resident whose name I forget, said since everyone had been talking for so long about switching to three weeks, why don’t we go ahead and do it. I said OK. She said she would have the scheduler put me down for Aug. 29^th.

Me with "bangs"

Today I looked in Patient Gateway and saw that I was scheduled for Aug. 22^nd, which is two weeks. It takes a lot of energy to keep on top of these things. Last time they had it wrong too, unless they changed it on purpose without telling me. Instead of scheduling me for two weeks from the previous time, they scheduled me for three, then went back to two. I wondered if they had switched me to three without telling me but then I wondered why it had popped me back to two.

I’m also trying to coordinate a checkup with Melissa with the ECP days. So this matters. As I’m trying to write and/or pitch some freelance stories, I’m distracted by this confusion. I wrote her that maybe they were just trying to test my mental facilities to see if I caught the mistakes. There should be a better way. I think the name of my old tennis team, Mass Confusion, could apply to some of this stuff.

On the dermatology side, the Mohs surgeon told me to apply a combination of creams all over my face, to treat a couple of squamous cell cancers in situ (on the skin) and head off other ones. It is Efudex and Calcipotriene , which someone online summarized as giving the Efudex superpowers. It caused a side effect of a fungus on and around my  lips. They burned like crazy. When I went to get the stitches out, my internist gave me a cream that made the fungus go away. I called my primary dermatologist to ask if I should still apply the cream combination. I left a message but didn’t get a return call. I stopped applying the cream combo. I guess if I want a definitive answer I’ll have to call the office again or email my dermatologist.

At tennis today, after I had put my pill box down on the table (because I had taken some pills on the way over) George asked how many pills I took a day. I guess I could count. I think it’s maybe 25. I said somebody called me a chemistry experiment. 

Also in between things today I had fun texting with Katie about maybe getting bangs. I took some hair from the bottom of my hair and put it over my forehead to show the effect of bangs. Maybe Katie and I will do it together. Also on the so-called beauty front, remind me to never get another gel manicure. It totally wrecked my nails. I did it for one of the two spring weddings I attended and thought it would be OK, but a few of my nails split in two and broke down below the nail line. I’ve been told it might take at least six months for them to recover. When I showed them to my dermatologist at the last visit, she said another reason not to do it is that you’re getting UV radiation when they bake the color on. I hadn’t thought of it but now I’m aware. 

My medical people have remarked on how strong my nails remained throughout everything I’ve been through. Leukemia didn’t ruin them, but a visit to Lucky Nails in Northampton did. That will teach me to be a walk in. If I had read the reviews, I wouldn't have gone. Well it is kind of weirdly funny to get unlucky after a visit to Lucky Nails so maybe I can laugh about it and after all they will grow back. I thought of going in and showing them what happened but what are they going to do? Give me my $25 back? Actually I think I paid an extra $5 for the gel. BTW it was my second and last time.

Wanted: someone to remove stitch and find watch

The craziest thing that has happened in a while is that a gremlin took my watch a day after I took a photo of it on my way home from ECP. That's extracorporeal photopheresis, the light therapy for graft vs. host disease of the skin, and one of these days I'll have to explain it again because I haven't done it in a while.  I took the photo to show my watchmaker friend Bev how the lavender  complimented my wraps, and that must have been the act that caused the jinx. (The bandaid is from a biopsied spot.)

I have tried to trace my movements and have looked in all the corners but it is nowhere to be found. A friend said it would help to turn a glass upside down on the counter. (No luck.) When I lost a bag of scarves, a friend prayed to Saint Anthony for me. But I never found the scarves, so I don't think it worked. I was really attached to that watch. I thought there was magic in the way it changed colors in different circumstances. That feeling when you just can't remember where something i

Has anybody seen my watch?

s is very disconcerting

If you do a search beginning with "is losing things a sign of," it fills in dementia, Alzheimer's, ADHD and depression. 

"Misplacing things often happens in everyone’s life, but when it is consistent and you cannot formulate a plan to to retrace your steps, it is a problem worth looking into more carefully," according to The Cleveland Clinic. I can't retrace my steps, or else I would find it, but no, I don't actually think I have Alzheimer's.

I'm wearing a green one until Bev makes me a new lavender one. What can I say, the replacement and the old one still cost a fraction of an Apple Watch.

What I really have is a problem with a stitch that I got in the first of two Boston visits last week, when I went on Tuesday for a spot check and Thursday for ECP.  I had called to try to get the two in one day, but the scheduler did not get the message. Well, the stitch is the immediate problem but I also learned that I need another Mohs surgery on another squamous cell cancer, this time a tiny spot on the back of my jaw. A spot on my wrist that concerned me to the point I thought it was melanoma turned out to be a squamous cell on the skin, as did the spot on my face. I need to apply Efudex, the chemotherapy cream, for three weeks. 

The one I didn't even know existed turned out to be the one that goes deeper. 

But back to the stitch. I thought it odd that when I left, the nurse didn't mention it. So I followed past procedure and called my friend, Nurse Jo, who lives down the street and removes stitches if there are not too many. I picked her some flowers. She met me in my driveway and asked where the suture removal kit was. I said I thought SHE had it. She said she used up all the ones she had – on me – and we agreed I would call the doctor about it. At least we got to chat for a few minutes.

Kathleen, one nurse, told me one thing, followed up by Kathy, who told me something else.

Similar-sounding names can lead to confusion. There’s Kathleen, the nurse for Dr. Liu, and Kathy, the nurse for Dr. Lin.

I had been talking to Kathleen about an upcoming appointment with Dr. Liu when she saw an unusual occurrence, and opening with Dr. Lin.  So she gave me the appointment. I was going to drive myself, but I took J up on the offer to drive me, and it's a good thing I did. I didn't expect to have three spots biopsied and get multiple spots frozen. She said I would get fewer skin cancers if I stopped doing my outdoor activities, but she knows they're important for my mental health, so she wouldn't tell me to stop. I protect so much of my skin that the only thing left would seem to be to get a mask for my face and a scarf for my neck.

A few days ago I called Kathleen about the stitch. She said anyone could take it out. I asked about the biopsy results, and she said Dr. Lin went on vacation and would get back to me when she came back but I should feel pretty good because if it was something serious, then she would have called me.

A day later, Kathy called and said the spot on my jaw is invasive and needs surgery. 

I know the difference between invasive on the skin and invasive inside my body, but I ask each time. I like to make sure, and hearing it again is reassuring.

Ann, my blogger friend, died from squamous cell cancer that had spread from her tongue to her organs. It is a different kind of invasive.

Meanwhile, the issue of the stitch is still unresolved.

Yesterday after my session at Amherst Community Acupuncture, my acupuncturist said she could try to snip it out. We sat by the window and she went after it with a scissors. She said she thought she got it all. 

Actually, she didn't. Two little bristly threads are sticking out from my cheek. I don't think stitch removal is in the boyfriend description, and I don't want to go all the way to Springfield for a doctor's appointment. Friends suggested the CVS Minute Clinic. I think that tomorrow, that's the way I'll go.

Yesterday I got a call about scheduling the Mohs, the procedure in which a surgeon removes a skin cancer a layer at a time until all the margins are clear. What I like least about it is that it keeps me off the tennis courts for a few weeks. The needles going in for the anesthesia come in second place in the dislikable department, but the doctor does such a good job that it isn't as bad as I thought it would be when I had my first one.

Odd that a leukemia blog ends up being more about skin cancer.

Three cheers for a driver who wasn't too bad

Last week when I got to Dana-Farber for ECP, aka the light treatment on my blood, I thought my blood pressure would be high because I was drinking a Cumberland Farms coffee with one of their caffeine shots.

Coffee snobs take notice: They have good dark roast coffee. I am one of them and I was surprised.

My blood pressure was actually fine.

“Must have been the driver,” I said to my nurse.

That’s because I was the driver,  and unless you count my internal monologue, there was nothing to upset me.

The drivers in general have been OK lately. More opportunity for calm, less fodder for writing. I’ll take the calm.

I drove myself because there were too many connecting points to trust a ride service to get me there on time.

On Wednesday I had ECP at Dana-Farber. Then dinner and sleepover at Diane and David’s, followed Thursday morning by back-to-back dermatology appointments at a Brigham and Women’s outpost at 850 Boylston Street. Then down to Dana-Farber for an 11 a.m. checkup with Melissa, then to the Cheesecake Factory at the Chestnut Hill Mall for lunch with a good friend. (I would say an OLD friend but that sounds like the friend is aged, whereas he is old as having known him for a long time, since college.)

Dr. Lin, who takes care of the surface of my skin, zapped many small squamous cell cancers on my face, neck, arms and legs. When you hear squamous cell cancer, you think, out, out, damn spot, but they grow slowly and aren’t large enough to need surgical removal. 

She does the cryosurgery with a softer touch than the overzealous Fellow in another office who zapped several areas so hard that I got blisters. (I told her about it and she said that if you overdo it, you leave scars, which is what happened on one of my hands.)

She wants me to apply Efudex, the chemotherapy cream, to these same areas. It agitates the cancers so that they turn red and angry and decide they don’t want to live with you anymore.

I actually just wrote a story, not yet published, about the side effects of Efudex, generic name Fluorouracil. I feel like I have no choice but to use it. The spots are red enough already and I don’t want them to get worse before I go to California next week for a wedding. She said it’s OK to wait.

They were going to make me get dressed and go across the hall to see Dr. Liu, who specializes in subcutaneous dermatology and is in  charge of the treatment for my graft vs. host disease of the skin. (That’s the ECP that I’ve been doing for two years.) But they relented and let her come to me. 

She wants me to continue getting the treatment every other week. It’s making my skin softer, though not less lumpy. Just because it’s fun to add one more thing, she wants me to go to physical therapy to try to increase the flexibility in my hands and wrists. The rest of me has gotten more flexible, but my hands and wrists are getting more tight.

Where “normal” people can put their hands in prayer position and lift their elbows, I can barely lift them at all. And when I try to place them flat on the floor in yoga, one almost makes it but the other is cupped. This is hard on my wrists, and makes a poor foundation for my down dog. Sometimes I use blocks...but that is another story.

She set it up in the Boston area, but when they called, I asked if they thought anyone in Western Massachusetts could do it. The person on the phone said yes, it would be possible, as long as I found someone listed on the website of the Hand Therapy Certification Commission, or HTCC.org.

It turns out there are many, including in Amherst, at the Valley Medical Group. 

Another opportunity to ask, who knew?

I don't listen to many audiobooks, but friends recommended Bruce Springsteen reading his autobiography, Born to Run,  and it made the two days of on an off driving much easier. One of the reviewers called it exhilarating, and it definitely was. It took my mind off skin cancer and up tight hands and all that. 

Of vampire bites and another bad trip

I've been telling people that the three raised, irritated spots on my neck are a vampire bite. At my last dermatologist visit, Dr. Lieu froze multiple spots, including these, that she said were actinic keratoses, potentially precancerous. These three did not go away. On Thursday when I bumped into Dr. Marty, my friend the infectious disease specialist, on my way to my checkup, I asked what he thought they were. "Vampire bites," he said. I guess I'll have to buy some garlic and wooden crosses.

Actually I will apply Efudex twice a day for four weeks. Dr. Lin, my primary dermatologist, said to do this after I emailed a skin selfie to her yesterday morning. So yes, I spent a relaxing early Sunday morning trying to get a good closeup of little bumps on my neck. She gave me her home email so I sent it there, with a copy to work. I'm a little hesitant to bother her, but the spots were hurting and a cause of concern. I have to admit they hurt because I pick and pull when the chemotherapy cream starts to irritate them to the point where they flake off. Reminder to self: Go get a bunch of little bandaids.

MEANWHILE, Last week's two-day Boston trip, with the light therapy on my skin one day and checkup the next, went well medically but ended up being a logistical nightmare that I imagine had medical consequences in terms of rising blood pressure. 

I wrote some of this Wednesday when I was waiting for my 3:30 p.m. ride home:

While waiting for a ride that is already an hour and a half late, after a conversation with an idiotic dispatcher, I'm back on the ride complaint tangent. My checkup with Dr. Alyea was at 1:30. Knowing the wait, I had called MART, the ride provider to medical appointments, to schedule the ride home at 3:30. They said I could always call if I got out earlier. I got a text from a Mark, confirming the pickup. I asked if he could pick me up earlier if I was done sooner, and he texted back, earlier than what? I replied, earlier than the 3:30 pickup. He said no.

I was done earlier, so I went across the street to Starbucks, then went to the pickup location at the designated time and called to ask Mark when the driver would arrive. He said, not until way past 3:30. I said I had to get home. He said, they told me after 3:30, and since it's one-way, it's a discharge, and when it's a discharge, it's always later. I said it's not a discharge, I'm at a medical offices, not a hospital, and he said he didn't know where I was, he was just the dispatcher. Say what?

Well, I often have one-ways when I do a back-to-back. Yesterday I came for ECP, slept at Diane and David's, then got a ride to Dana-Farber for the checkup, and then scheduled the ride home for today. I said, I've been doing this for nine years and I know that it is not a hospital discharge. He said we could keep going back and forth or he could contact the driver to find out when he could get here.

I miraculously got through to MART's complaint line. The woman placed me on hold and said she would investigate. When she got back to me, she said it was a new contractor, they did not understand how it works, that sometimes patients want to go home from an appointment, not necessarily from the hospital. ALSO there was a bad accident, he was stuck in traffic, and patients waiting to be picked up were calling from all over the place.

I didn't think it was unreasonable to have a 1:30 appointment and get home by 6:30. My friend Ken Ross, who would be reviewing The Royal Danish Ballet at Jacob's Pillow, had asked me to go with him. He was going to pick me up for the approximately one-hour trip to bucolic Becket. It hadn't been a great day at ECP, and I was looking forward to it. The nurse had missed the vein, leading to pain and a geyser of blood. A different nurse got it into the right place on the second try, but once the arm has been disturbed, a remnant of pain lingers.

Ken and I texted back and forth. When it appeared I would not be home by 6:30, I suggested going home, jumping into my car, and meeting him for the second act. We agreed on that plan. When the driver finally arrived, he said the dispatcher had sent him too far away to possibly pick me up at 3:30. I did my Facebook Live version of his dialogue, typing onto as he complained that the boss knew he didn't like driving in Boston but sent him anyway, that he has anxiety and phobias and is on several high-potency drugs and is on disability, that the boss actually gave him no exact time for my pickup, that he might not get paid, but he has to pay his bills... 

I felt worse for him than I did for me and gave him a nice tip.

 I probably should have stayed home once I got there around 8, but I was determined. So I drove the hour to Becket and got in for the second part. It was beautiful but very short! Afterwards we sat outside and had a drink and talked. (Mine was only a wine spritzer.) We go way back and have a lot in common and a lot to talk about. That news "thing" clicked right in. I remarked that you couldn't sit down with any old person and have a lively discussion about SEO.

It was after midnight when I got home. By that point I was wired and couldn't go to bed. I made the mistake of going on line and catching up on the latest disastrous news from the border. Note to self: Next time read a book.

I was glad I ended up going, but the next day I could barely move, and it took a couple of days to recover.