2nd shot in the arm and something growing on my nose

Wintry day at Ashley Reservoir

I got my second shot today, yay! And on the same day, I found out that our beloved Shakespeare in the Park is going to happen again this summer. So, things are definitely looking up.

I have a new doctor whom I have only met once. Here is something I wrote about getting a new doctor. These changes make me think of my sweet friend Kelly and how devastated she was when her therapist left the area. Of course there was so much more to what caused her to take her life. But it is the last thing I remember her talking about. Sorry there is no transition to this next thing...

Medically, I mostly live in dermatology now. There is something on my nose, and it is making me cross-eyed. And no I did not tell a lie. 

It goes like this. Dermatologist #1 biopsied it and said it was another squamous cell cancer and sent me to Mohs surgery. There, dermatologist #2 said it was not bad enough to do surgery on and said to apply the chemo cream combination. It almost went away, but not all the way. Dermatologist #3 said it should have been removed, because it is growing, and said I should go back to Mohs. YES I have that many dermatologists. Don't ask. Maybe some other time. 

I sent a photo to dermatologist #2 at the Mohs surgery center. The person who took my info said she would get back to me. She got back to me and said to come in on April 21st. I said THE THING IS GROWING on my nose. She excused herself for a moment (I'm thinking of a car salesman coming back with a better deal) and said to come in on March 31st. She said the doctor probably wouldn't do Mohs but would get it off of my nose somehow. (Presumably a better way than having me pick it off.)

Dermatologist #3, who is really my first and number one dermatologist, said that was OK.

But I nicked it with a washcloth and now it is a little bit detached. I thought of calling to see if they have any cancellations before that, or, alternately, asking dermatologist #1, who biopsied it and who is easier to get an appointment with, if she could see me before.

They are all in Boston. Last night I dreamt that I called the Mohs office early in the morning and was surprised to hear the doctor herself answer the phone. She sounded sleepy. I said I was sorry. She didn't seem to mind. She gave me the phone number of a different doctor to call. I said I didn't recognize the number and asked if it was local. She didn't tell me. I couldn't read it that well. I tried to dial and had trouble with the phone. At first it was a rotary phone. Then it was a cell phone that I couldn't operate. 

The old "can't dial the number frustration dream."

Well in any case, as I said, I still think things are looking up.

We took a nice walk around Ashley Reservoir. It was good to get out of the neighborhood, even if only to the next town over. I didn't even have much PTSD about the time I got lost when running my last Turkey Trot. 

In a couple of more weeks, I should be good to go somewhere else. Maybe even into Ben and Meg's house to have real hugs with those cute little grandkids. 

When things go bump in the night

I don't know which end is up.

Well, I know which end WAS up when the tree fell on my house. That's the end of a big tree limb which was supposed to be up facing the sky but which was instead facing across my garage roof (which probably saved me) and into my bedroom window.

My house is a mess, and my two special spaces – my bedroom and kitchen – are in disarray. And that has affected my head. Also the squamous cell biopsies came back as positive, i.e. needing more Mohs surgery, but I found out in an unfortunate way when the system (the Patient Gateway portal) spit out the results in medical jargon (invasive with wide margins and other scary stuff) before the doctor had a chance to call me. I called the office and she returned the call the same day and apologized for that happening. It is more of the same, more Mohs surgery, skin cancer as a chronic disease. She is suggesting a new medication that might cut down on these, but I have to run them by my team due to the side effects.

Bedroom ceiling

I had been hesitant to put it on Facebook because I'm trying to use it less, but I did it anyway and was gratified by the outpouring of support. So that is the good thing about Facebook. If you don't already know, here it is. A tree fell on my house. Actually it was part of a tree. Here's what I wrote, referring to the night of Dec. 18th:

So this happened Wednesday night. I was in bed and heard a big boom. The tree split in the wind and came in right above my head. I had spent around $6,000 this spring to remove dead or damaged pines but this one seemed fine. South Hadley police came over to check me out. I was pretty shaken up but eventually able to sleep in another room. Obviously insurance will pay but I’m not looking forward to how much work needs to be done. Will need to get some areas covered to keep cold out. Oh also there is a big hole in my garage roof. Nobody died or got hurt so that is the bright side.

Things are moving along. The original tree work was done by THE tree guy – Peter Edge – and I don't think he is responsible for what happened. It was a very windy night that included an ice storm. In any case he came the next day and cleaned up the mess. I have a contractor who sent someone over to put a tarp on the garage and the house. I learned a new verb. To tarp. They tarped the garage and the house roof. Spell check doesn't think it's a real word but they were using it. So. An insurance adjuster came and said he has seen worse, such as houses split down the middle. Of course on the news we have all seen worse caused by tornados and other disaster. The copper roof will be a challenge.

And Australia is burning. Of course climate change is a hoax.

But I digress.

Tree guy working

My bedroom has to be emptied out. It is mostly done. Joe and Katie helped a lot. So did my honey, who took apart my brass bed and put it in another bedroom while I was out and about. Before they were moved, I took out some dresser drawers and tried not to put them back until I threw away or gave away some stuff. I have drawers full of cards from the kids. Mother's Day, Valentine's Day, birthday, cuteness and love. I read some and put some back and could barely stand to do it but I threw just a few away some. Buried underneath, a wedding photo in a beautiful frame and a letter from an old flame whose handwriting sends me back. He wrote that he couldn't believe we were 50. I kept the photo in the frame and threw out the letter.

To make room for everything that I need to remove from a large part of the kitchen (above which the ceiling is caving in), I cleaned out a cabinet and found a treasure trove of kids' writing. I brought Ben a notebook of his from 1992 to 1993. A lot was about sports. He also write a Clinton-Gore campaign spot. (He didn't believe Bush, and he thought Ross Perot couldn't win.)  Katie wrote about the adventures of a character named Louise and put out a newspaper.

In the room where I'm sleeping, the radiator snaps, crackles and pops. It is in the old part of the house with radiators, not the quiet baseboards from my room. It is Joe's old room, and the floor is so slanted that I feel like I'm downhill skiing to get out. The morning light comes in so brightly that the first night, even with good curtains, I was half asleep and wondering who turned on a light.

If things come in threes, hopefully I'm done. But I think I might have four. First the car accident, then you could maybe count rolling over on my glasses, then the skin cancers and then the tree. Maybe I should remove the glasses from the count.

I went to two fun Hanukkah parties and had one nice Christmas eve and Christmas morning.

It was great to have two kids living in the house for more than a couple of days.

As usual, I was sad that they left but grateful for all of them.

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.

When the worst part is the healing

Not a pretty profile

Ellen, the physician assistant at ECP (the light therapy), said that my Mohs surgery for invasive squamous cell carcinoma was on a small area and would be no big deal. All things considered, it is definitely no big deal, but for the week in which it is healing, it is.

For a small spot that was barely visible (the resident called the BF into the exam room to make sure they had the right spot), it must have gone relatively deep. It only needed one "pass," but it required internal stitches and a running stitch with maybe eight loops. 

Though my blood pressure was a little high, I wasn't worried about the procedure itself. Dr. Schmultz, at the Mohs surgery center at Brigham and Women's Faulkner Hospital, in Jamaica Plain, does such a good job of giving the anesthesia that you barely feel it. Also it was quick, and we chatted for most of it about such relevant topics as making sure I was taking niacinamide (same as nicotinamide) which has been shown in studies to cut down on skin cancer risk. I asked about a product, Tru Niagen, which has the same active ingredient and a big anti-aging marketing campaign. She said it was all the same and she wondered how long it would take for someone to make money off of it.

The anesthesia had worn off by the time we got home. It started to ache. As directed, I took 10 mgs. of oxycodone. It helped with the pain but it affects my sleep. You would think it would knock a person out, but it puts me in a strange state. I took a sliver of Ativan. I tried to read but couldn't focus. I doubt that I got much sleep.

Since then it has hurt on and off. I don't remember the other healing processes being as uncomfortable. Maybe I just forgot. Maybe it really is more uncomfortable due to positioning which causes the area to stretch every time I move my head. I haven't played tennis or run and have just been walking. Yesterday and today I went to yoga because I felt like I needed more. My mental state is not great. The other night, when I washed it and applied Vaseline and a new Bandaid, I must have activated something because it itched so much I thought I would never get to sleep unless I took a Benadryl. I took the Benadryl and woke up hung over. I'm looking forward to tomorrow, when I get the stitches out.

Here's a little something I wrote about having four stem cell transplants. I figure I've had more pain in my life than the one I'm having in this healing process. Still, the pain you have at the moment is the one that hurts and it doesn't make it much easier to think about times that were worse. 

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.

Expecting the unexpected, and being right

In the waiting room after Mohs surger

Yesterday when I went to the Mohs Surgery Center at Brigham and Women’s Faulkner Hospital, I had a feeling that the spot that had been in my ear had disappeared, although there could be a trace of something.

Dr. Lin, (Jennifer), had said the spot was too small for her to biopsy, so that is why she sent me to a specialist. She said it could be a skin cancer or a pimple. Jeff drove me, and I said we might be going all the way for a pimple. I imagined a quick visit leaving time to go out for lunch or take a walk in the Boston area afterwards.

I figured the visit wouldn’t be wasted, because I always have other spots to show.

My ear was indeed fine, but a spot at my right temple looked suspicious. A nice Fellow examined me first. Nice fellow, it sounds funny to say. He said the spot might be a basal cell carcinoma. When he called Dr. Schmults in, she agreed. I signed the papers giving permission for a Mohs, and I lay down on the table.

When she started to apply the anesthesia, I said I had written something nice about her, and she better not let me down. She laughed and said something along the lines of it putting a lot of pressure on her.

As usual, she did a good job. She applies the anesthesia in repeated little pin pricks so that you can hardly feel it. At 2:18, while she was operating, I heard my phone vibrate. It was the widely mocked presidential alert.

I had to wait an hour while she looked at what she had taken out. When she returned, she would know if it was a basal cell or squamous cell and also whether she had gotten it all.

My reaction to presidential alert

It gave me a chance to follow #PresidentialAlert on Twitter and see all the fun people were having putting their own words into it or tweeting reactions. I retweeted some of my favorites. 

The nurse called me back after an hour. It was indeed another squamous cell. The doctor had gotten it all, so she wouldn't need to go back for another pass. The Fellow zapped some other spots I pointed out, a few on my hand, one at the top of my head (he cut a little bit of hair out to do it) and one on my nose. The zapping hurt more than anything else.

The nurse said not to exercise or do yoga for four days. That’s a lot for me. At least it’s OK to walk. When the squamous cells have been on my leg, the restrictions have been worse.

Of course there wasn’t time to do anything. When we got home, it was after 6. I had run out of prednisone, so we went to the store to get the prescription. The anesthesia started to wear off, and the area of excision started to sting. I took some pain medication, and we walked down to Food 101 for dinner. It was a balmy night.  I told my chauffeur that he was a mensch. He also turned out to be a good dinner companion.

It had been a long day, so I don’t know why I wasn’t tired. I stayed up to watch Stephen Colbert on the Late Show, followed by James Corden on the Late Late Show. Both were having fun with the Presidential Alert. Corden did his Take A Break bit at one of Los Angeles’ hottest restaurants, going around to give employees a break. I laughed so hard that I forgot about the blisters on my hands and nose and the bandage on my face.

Threatened, cut, zapped and stitched

Dinner

As I wrote in my Facebook rant on the way to get my Mohs surgery yesterday, the driver was one of the worst, starting with arriving half an hour late and then ignoring my directions to go the fastest way to the Pike, saying,"You're not my mother and I never listened to my mother," leading to "Don't fuck with me or I'll fucking drop you on the road," when I asked him to stop talking on the phone as he was yelling at his dispatcher that it was her fault for over scheduling which was the reason he was late.

It might seem odd to write what is happening live on Facebook but it calms me down, keeps a record, and makes me feel like I'm talking to friends, which I am (thank you very much) because I feel supported when I see the comments.

I totally lost it and put my head down on the seat and was crying so much when talking to Katie that I couldn't get the words out. Popping the Ativan that I meant to save for the surgery, plus talking to her, calmed me down. I was able to joke that the big driver in chains probably wouldn't kill me because it didn't look good.

I need to file a complaint with MART, the MassHealth transportation service, but they keep you on hold so long that I need to do it on my landline when I get home.

My expectations for the Mohs were worse than what actually happened.

I don't think they teach you this anywhere – expect the worst and then you'll be pleasantly surprised if it isn't so bad – but that is what happened.

I had worried that the squamous cell on my calf was so large that they would need to take a graft from my side like they did for the one on my ankle recently. (It was larger than a nickel but smaller than a quarter.) But it wasn't necessary.

I envisioned having to get a lot of hair cut for the one on my scalp, but they only snipped a little.

They give local anesthesia with needles into the area and cut away.

They send the sample off to see if the margins are clear, and if not, they repeat the process for multiple passes if necessary.

The margins were clear on both so I was done with that.

Little scaly spots on my skin, which I was afraid would need to be biopsied, got zapped. Base of thumb, neck, and forehead. Little blisters today.

Margaret picked me up and took me to Needham.

Nick said the bandage looked like a yarmulka.

I reminded him that the last time I was there, he said the bandage across my forehead made me look like a Revolutionary War casualty.

This is all my kind of humor and made me laugh.

He prepared a nice dinner and then we talked for a while and went to bed early for me (9-ish.) I said I should stay there more because I'm away from the distractions at home that invite me to putter around to all hours. At bedtime, the pain on the top of my head and on my calf warranted an oxycodone .

This is problematic because opiates disrupt normal sleep patterns, causing you to feel like you are never totally asleep and to even feel like you're hallucinating. Still, this half-sleep is better than lying awake in pain.

I went to sleep but woke up around 2 a.m. and went down to the kitchen and wrote an email.

Then it was back to bed and up again around 4. I listened to part of Thich Nhat Hahn's Deep Blissful Meditation, drifted back to sleep, woke up at a normal hour and asked for strong coffee.

After a while, I took The Ride to Dana-Farber for an uneventful ECP (from 1 to 4) and a normal ride home with a driver who was no problem except for a stream of consciousness about why he is such a good driver.

When the nurse called earlier rom the Mohs office to check on me, I asked if she thought it was OK for me to go to a reading. She said she didn't see why not as long as I wasn't standing too long or running around.

So in a quick turnaround, Mimi picked me up at 6:45, about 20 minutes after I got home. We went to the Florence Civic Center to hear our former colleague and gifted writer, Fred Contrada, read from his collection, The Columns of Fred Contrada. Fred was recently diagnosed with Parkinson's. The room was full. You could feel the admiration and support.

I had only had a snack or two for dinner. Herrell's beckoned; it was on the way home after all. I thought I would get my usual two scoops of something boring until the woman in front of me pointed out the brownie bowl. That looked good so I took it, figuring I would get vanilla to fill it.

It turns out it came with ice cream, hot fudge, whipped cream and a topping. I choose walnuts.

I sat down with Mimi to eat what I guess you would call dinner.

On the way home the stitches in my scalp started acting up again, so I knew I would need another oxycodone. I took that and as of this writing am wondering how the night will play out.

Tomorrow when I have the time to stay on hold for who knows how long, I will file that complaint with MART.

Hot time under the blue light

Under the blue light before PDT

While I was waiting for the blue light to become available on Thursday (another dermatology patient was using it for PDT), I talked to Dr. Lin (Jennifer) while she biopsied what she calls "little guys." Three of them.

I asked why she doesn't call them little girls.

No particular reason, though when it comes to little girls I enjoyed seeing the video of her eight-month-old little girl laughing her head off about something.

I popped an oxy because I had them in my purse; Melissa said I should take one before ECP (which I had the day before) so that I won't have to deal with pain if the needle slips. I might not have to do that anymore because the new angio needle is working nicely.

I figured if I was going to get three needles in sensitive areas and have pain afterwards, it was a reasonable thing to do.

Note to anyone who thinks this is strange: Oxycodone is actually preferable for me than Tylenol (bad for liver) and ibuprofen and the rest (bad for kidney).

One biopsy on my right calf – a raised and irritated area that she already said was probably a squamous cell after a sent her a photo. And which will probably need another Mohs.

One on the top of my head.

The other on the knuckle of my thumb. Same as happened before with the spot on my ankle (which turned out to be a big deal needing a graft) I had shown this spot that didn't heal to a couple of people who said it was nothing. Note: A spot that doesn't heal is always something.

After all the trouble I had with my last one, it has finally healed. On time to get another. They're getting to know me well at the Mohs Surgery Center at Faulkner Hospital.

My first question when it was done was how long I would need to sit out of tennis. The one on my calf isn't that big but because I have stitches on my thumb, she said about a week.

Although these are a pain, they are not serious except to my mind.

I found out about someone who died from a melanoma that had appeared on the person's neck.

Suddenly the spot on my scalp was a melanoma too...which in my PTSD-y way I followed quickly to my demise. I reasoned out loud to Katie that since I didn't have melanoma in the morning, I probably didn't have it at night after hearing about the other person. Wise child reminded me that just because someone else gets something, doesn't mean I (or anyone other than the person) will get the same thing. Wise friend who had a melanoma and had it successfully removed reminded me that since I'm watched so carefully, they would catch it early before it spread.

I find out in about the week.

The lovely photo of me (wearing my Bev Bloomberg watch) is under the blue light machine at the Brigham Dermatology Center for the photodynamic therapy (PDT) that burns off a layer of skin. I get this done every year. Dr. Lin did it more on my neck because more "little guys" are trying to come up there than on my face, which she said looks pretty good. (All things considered...my addition.) The 16 minutes doesn't sting as much on the neck as on the face.

I had estimated that the driver should come at 4. When he called to check in, I said it was an estimate. When I realized it would be later due to the waiting line for the blue light machine, I called and said it would likely be another 15 minutes.

"Don't leave without me!" I said, remembering a couple of times when that had happened.
He assured me that he wouldn't.

I turned off the sound on my phone during the procedure. When I went to look at around 4:20, I saw that he had called five times and texted once. I called back and said I was coming. He groused, "You said it would be 15 minutes."

When I got in the car he complained some more.

"I never should have taken this job," he said.

He said he is 60 and too old to have to take the trip at the end of the day because he wouldn't get home to Worcester until 9 and was up at 4:30 and they shoulda put the younger person on the earlier shift.

I started to put on my headphones to listen to All Things Considered, but he kept talking.

The phone rang and he had a conversation (while driving). He said it was his son. Then he apologized and said his life is hard because his wife left him after 30 years because she couldn't handle their son, who has Asperger's. Knowing a little bit about this, I asked a question about the spectrum, and, apparently thinking this was a place, he said his son can't get treatment there or anywhere.

On the first leg of the trip the day before, I had a nice polite driver from Kenya. He told me he wants to start his own transportation company because the others are poorly run.

At first I thought this would be another doozy because when we started driving and I asked him to close his window because it was blowing on my face, he complained.

They had given him a bad car where the heat is not regulated and if he didn't open the window he would overheat. Please open the window, I said. We made a compromise and went on to have some political chitchat.

He said he is a liberal but didn't vote for either presidential candidate because both were corrupt, especially Hillary Clinton, who shared classified information on a personal server and put the country at risk.

Not a good conversation to have before getting your blood pressure taken. I pointed out that it wasn't classified, but I didn't want to get into a debate about the FAKE news and FALSE equivalency that got us into this mess.

He asked if I wanted him to lower the headrest on the passenger seat so I could look out at the view. I said that was OK, I had seen enough of the Mass Pike.

At least I had some material to tell my nurse friends at the Kraft Blood Donor Center at Dana-Farber, where I would be for the next three hours for the light therapy.

Squamous cell city and housemaid's knee

At Mount Holyoke with Ben and Nell

Last Friday I went to Boston to Brigham Dermatology Associates to see dermatologist #5 to get three spots biopsied.

Saturday I had an adorable little visitor.

Tuesday I went to the Mohs center at Faulkner Hospital (also affiliated with Brigham) to have a squamous cell cancer removed from the middle of my forehead and another removed from my right hand. I was lucky because this can take multiple passes but it only took one each. This is the procedure in which you wait about an hour and a half while the doctor studies the specimen under the microscope to see if all the margins are clear.

Wednesday I stopped in to see my nurse practitioner, Melissa, before my 3 p.m. light therapy. I showed her the egg on my knee. She didn't like the way it is inflamed, and since they are very careful with me, she made an appointment for me to see an orthopedist the next day. I wasn't planning to stay over and the logistics got complicated and frustrating but Margaret came and took me to her house and saved the day.

While I was waiting for the orthopedist on Thursday, I got a call from the Friday dermatologist and learned I had three more squamous cells. One on my left hand, needs Mohs. The others, on my cheek and another on my left hand, can be treated with effudex, a chemotherapy cream. It is the second one on my cheek. I also have been treating one on my nose.

Somewhere along the line I think I missed a face fry so that is why I might be getting more on my face. I have one scheduled for February.

I was super careful this summer, wearing sun protection gloves and plenty of sunscreen, so this is disheartening. It is not serious but more of a drip, drip, drip. When the Mohs surgeon was leaving the room I thought she said something about another pill I can take, but she didn't say what it was so I wrote an email to my main dermatologist to ask her about it. Not that I want to take another pill.

Meanwhile the orthopedist came in and said, after looking at my x-rays, that I have housemaid's knee, otherwise known as prepatellar bursitis. He said to ice it and it will eventually go away. I said I assumed I should rest, but surprisingly he said not necessarily. I walked Maddie today but that was all.

I have a little row of stitches on my forehead, I think about six. My local doctor is going to remove them on Tuesday. In the meantime a friend who is a nurse is changing the dressing for me.

It feels like I have a nail going into my head. The good news is that it (sort of) takes my mind off the election. The bad news is that it hurts like hell. Although it does feel better today than the day before so that is good. The election still hurts.

Tomorrow we have a signing at The Odyssey for the book "On Being Italian: A Story of Food, Family and Faith,"  to which I contributed about a dozen stories.

Someone who will remain anonymous told me that because of the way the bandage covers my forehead, I look a soldier wounded in the Revolutionary War.

I might either have to cut bangs or pull a hat down low. Or more likely just go as I am and assume people will understand...or look the other way.

Mohs today, ECP and museum tomorrow

Today, needles in my face.
Tomorrow, in my arm.

Par for the course.

An odd cliche for me to use since I don't play golf but it fits.

I drove to Diane's and she was kind enough to drive me to Brigham and Woman's Faulkner Hospital for a Mohs surgery on a tiny squamous cell that had spread a little under the skin on my right jaw. The biopsy seemed like it took care of it, which sometimes happens, but Dr. Lin wanted me to get the Mohs. I figured it would just take one pass, and it did. In others that I had done, it went as high as three, but most often two. The surgeon takes out the cancer and a little bit of the margins, sends the specimen to a lab to see if it is all gone while you wait about 45 minutes, and does some more if needed.

I got a little dizzy while I was waiting. The nurse's aide lowered the top of the bed so the blood would go to my head. I took the opportunity to raise my legs up in the air so it was as if I was doing legs up the wall in yoga. After that I dozed off. On the way back to the house I got a cappuccino at you know where.

Tomorrow I have ECP. I had it moved to 11 a.m. instead of 3 because at 5:30 I am attending a dinner for One-to-One volunteers. These are bone marrow transplant recipients like me who talk to  patients undergoing treatment. I have only talked to a couple of people since my situation does not match up too well with others. But I did have a good conversation with one patient recently, sharing some ideas about how I got through it. He was kind of down and said he felt better afterwards.

I don't know anyone anymore who has had a transplant. It should be good to meet some others. I don't know if there will be any "multiples." A thought that brings me back to how much I miss my friends Patricia and Anne.

I'm going to have some time in between so I think I'll walk down to the Museum of Fine Arts or get there some other way if the weather isn't good.

Oh and I forgot to say I don't think I can play tennis for two weeks. What will I do?

A moment of panic, then, just more of the same

What would you think if you looked up the results of a biopsy of a spot on your face and you saw the word "invasion"? Even if it said "superficial blunt-type invasion," wouldn't you be worried? Especially if you had a friend who died after a squamous cell cancer on her tongue spread to the rest of her body?

I was definitely worried when I went to PatientGateway to see why I got an email saying I had a message and then looked up the results from my two biopsies of a couple of weeks ago. Dr. Lin said she would call me with the results; when I didn't hear I figured no news was good news, but then a friend said I should really call, so I was about to but then I saw the test results. It was the first time in all these years that I slipped through the cracks.

Here is what I read:

PATHOLOGIC DIAGNOSIS:

A. SKIN, NASAL DORSUM, PUNCH:

Part of an actinic keratosis, focally at least bordering on squamous cell

carcinoma in situ.

B. SKIN, RIGHT JAWLINE, PUNCH:

Part of a SQUAMOUS CELL CARCINOMA, at least in situ.

It is difficult to exclude very superficial blunt-type invasion.

It was early in the morning. Luckily I had the doctor's home address, so I emailed her at home and at work to see what this meant. The words "very superficial" sounded OK, but not coupled with "invasion."

She responded right away, saying she was so sorry she hadn't called and that although those words that I mentioned sounded scary, it isn't that bad but it will need Mohs.

"The nose is ok. Blunt-type invasion sounds like a scary word, but blunt-type is the least worrisome type of invasion. All in all, it’s a pretty low risk lesion, but to be safe, I will be sending you to Mohs."

Mohs is the surgical removal of skin cancers. I have had it before in many places. This one will be on my cheek. The bright side: It is not the one on the top of my nose. It is a better place than two of my others: One on the top of my lip and the other practically on top of my tear duct, which left a hole necessitating a visit to a plastic surgeon who took a piece from my eyelid to cover the hole. She said I was getting an eye lift. I asked if she could even me out by doing the other side (joke) and she said no. I had one on my neck and one on my wrist, also.

I need to make an appointment for a consult with a Mohs surgeon in Boston. 

Another fun thing: In a couple of months I am going to return for another session of the face fry that burns off the top layer of skin and with it the spots that can turn into cancer or that might be early cancer. I have some on my neck, also, so PDT, or photodynamic therapy, will extend onto my neck. This treatment uses photosynthesizing agents along with light to kill cancer cells. It burns worse than a terrible sunburn. Holding a little fan in your hand and waving it around helps, somewhat.

So the year that came off my life when I saw the word "invasive" will be returned to me when I get my new skin.