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.

Kafkaesque time in dermatology land

Several weeks ago, I emailed my dermatologist with some questions and concerns. If I catch her at the right time, she often responds quickly. But if I don't, my email can quickly drift down to the bottom. She told me that if I didn't hear back, I should call, so that is what I did about a week ago.

I spoke to a nurse who is new to the practice. I gave her my list. She said she would get it to the doctor.

When another week passed, I called again (yesterday) and spoke to someone at the desk. She said that the best way to get in touch with the doctor is to email her.

"No, and no, no, no!"

I used to say this to my kids when I wanted to make a point. Although I didn't say it to the person on the phone yesterday, I wanted to. Instead I explained that I had already emailed, and then spoken to someone, and neither had worked.

So she patched me through to the regular nurse. I told her I wanted to know which creams, lotions or potions I should put on different kinds of spots and also said that I wanted to change my appointment in May to a regular checkup instead of a repeat PDT, or photodynamic therapy, as my doctor had planned, a departure from previous years when she has only done the painful "face fry" once a year, in the fall, when I am not outside as much as I am in the spring. (It's bad to be in the sun after it.)

"You're not high maintenance, are you?" she asked.

She said it was a joke and I knew it was a joke.

My answer was part joke and part serious.

"This is what happens when you have four bone marrow transplants and I'm trying to be a freelance writer but I spend half of my time following up!"

The practice, Brigham Dermatology, used to have a wonderful care coordinator on whom I could count to get things straight. I miss her because not only was she efficient, we had also become friends. One time when she helped me out in a pinch when I was in Boston and needed a suspicious spot looked at, I had to hang around and wait a while. I didn't mind because I was glad that she had squeezed me in, and I used the time to get her a little something for her desk. It is frustrating to have things run so smoothly and then turn into a bit of a free-for-all with nurse #1 who I spoke to last week apparently never getting the message to the doctor and my having to call again and explain the whole situation to the people at the desk and to nurse #2.

One of my problem areas is a new divot on my right thigh. After my last appointment with my primary dermatologist, the dermatologist in charge of my GVHD of the skin saw me in the hallway and graciously, on her lunch hour, took me into a room to look at the indent. She injected several tiny shots of cortisone into it and said if that didn't work, to use a cream that I used before, Clobetasol. Turns out I didn't have any, so I told nurse #1 last week that I needed a refill. She asked if I wanted cream or ointment. I said cream, which I had before. When I talked to nurse #2 yesterday, she said, oh, it is very expensive and your insurance doesn't cover it any more. Will have to wait for an alternative.

On my left thigh I have a lipoma (biopsied and deemed not problematic). Maybe I could suggest taking it off and using it to plug the hold on my right thigh. Or not. But at least I would be more balanced.

I could use my dermatologist's home email. She gave it to me, but I hesitate to use it unless it's especially pressing, say, for example, waking up in the middle or the crack of dawn to send her a photo of a spot that is freaking me out because I'm sure it is a melanoma. She is always reassuring, pointing out that for some reason bone marrow transplant patients tend to get squamous cells. I have had one basal cell (in my ear) and more squamous cell skin cancers than I can count.

Meanwhile I need to get to the dentist because my "teeth" fell out...well, actually, it was the temporary that he put in last week in preparation for getting three crowns.

I had been very careful and was just eating something soft – a croissant – when I had that bad feeling of something odd floating around in my mouth. At least it was not the nail that a friend found in her food when eating in the restaurant across the street from The Republican.

You never know what can happen.

Time for a double helping of alphabet soup

Today I had ECP.

Tomorrow I have PDT.

Time for alphabet soup in Boston.

OK, so by now you might be familiar with ECP. It's extracorporeal photopheresis, the internal sunburn, the UVA light therapy treating my graft vs. host of the skin. The blood burn. The thing I do every other week when I complain or mercifully don't complain about the drivers.

I was relieved to get a nice, polite one today. Two weeks ago another driver was late and rude. I started to get worked up. But Katie, who is home in between engagements, said, "Everyone calm down."

She told me she would drive me, which she did, and I had no complaints.

I went earlier today, at 1 instead of 4, so I could go to a community potluck for the content marketing company, Skyword. I want to write for some of their clients.

Over at the Kraft Family Blood Donor Center at Dana-Farber, I'm getting used to doing two needles. It takes two hours instead of three or even four. Not that I dislike the company – the nurses have become my friends – but I could think of something better to do than lying still with a needle, or needles, in my outstretched, immobile, arms. I passed the time by watching an episode of The Crown.

Then I took an Uber to Diane and David's so I could change my clothes and leave my bag before heading out to the WeWork shared working space near South Station.

Because we had gotten into traffic, I didn't have that much time for a turnaround, so I ended up taking another Uber. I hope I get some content writing so I can make up for those costs. It was a fun event in which I talked to some interesting people and went to a workshop on how to boost your freelance writing business.

It's a good thing I was wearing long sleeves: I had a bandage wrapped around each arm underneath my elbow, where the needle went. Pink with purple hearts. A good combination.

Determined not to take any more Ubers, I walked across the street from the cool WeWork co-working office space to South Station. Treated myself to a kids' size Pinkberry and thought about how nice the train station looked compared to when I moved to Boston eons ago and was mugged on a dark commuter rail platform...and called my father crying.

Tomorrow I have PDT, the face burn, or photodynamic therapy, in which Dr. Lin, or rather her assistant working a machine, burns the top layer of skin off of my face to head off any lurking skin cancers and get rid of thingies that are on the surface of my skin. In the long run a better alternative to zapping them but not fun while it is happening.

To recap, it feels like the worst sunburn ever. But you move a handheld blower around your face and think of something else and it the time goes by. I can't remember the exact time, but it is less than 15 minutes.

Then out to lunch and then back home to finish a writing assignment. I'm working on three stories in between all this medical stuff this week.

Oh, and on Monday I went to the dentist and found out that the enamel is wearing off on the outside of my "good" chewing side and I will need two root canals and two crowns.

I'll think about that tomorrow.
,

Falling down, getting up, going to Boston

Pretty relaxed with a needle in each arm

As I walked into The Kraft Family Blood Donor Center for my internal sunburn Wednesday, a nurse was asking another patient the routine questions, including, "Have you had any falls?"

I had planned NOT to mention that I fell the night before during a clinic at the Ludlow Tennis Center. Instead, I said, "Don't ask me." Then I told them anyway. I had a "good" fall, meaning that I managed to get back up and continue to play. My foot must have turned funny. I lost my balance and went down hard.

"Don't put it on my chart," I said.

Another nurse said they were going to put an orange bracelet on me to mark me as a fall risk. But he said it laughing. And I went over to him and started bouncing around on my feet to show him that I was OK.

I've said it before but I'll say it again: Except for the part with the needle in the arm for three hours, and the part with the unpredictable transportation, and the part about spending basically a whole day on it every other week, going to Dana-Farber for ECP is not that bad.

The driver was a nice older guy who said he hadn't seen me for a while. I couldn't quite place him, but when he pulled into a rest stop, I remembered that he is the one who stops a lot. Bladder problem or cigarette? Who knows. He took Route 9 in, and when I mentioned that the other drivers avoid this crowded road and go all the way to the end of Mass Pike, he said they are the same. They are not, and I was about 20 minutes late.

Marc, the nurse who got me to use two arms last month, came over and did it again. The secret to it is not asking. Because when the other nurses ask, I usually say no, I would really like to have the use of one hand.

But I had taken my oxycodone and was pretty relaxed. You can see it in the photo. The WHATever approach.

Afterwards I went to Diane and David's. Diane made a good dinner. I tossed and turned most of the night. It was probably the after effects of the oxy. Useful when needed for pain but a disrupter of sleep. I kept thinking that I lost my necklace, (one that Diane gave me that I wear most of the time) then waking up and checking.

It was probably a subconscious expectation of going to the dermatologist the next day. The last time that Dr. Lin (Jenn) did a full-body check, I took the necklace off and put it in my pocket. It got so tangled that only the detangler expert, Jim Bloom, could restore it.

Jenn had a resident who came in first. He checked out my spots and recommended doing another round of Effudux (chemotherapy cream) on my hands, also adding my arms. Dr. Schmults, the Mohs surgeon, said it works best when you wrap your hands, which I couldn't do, so the last time I did it I slept in exam gloves. He also recommended doing photodynamic therapy (PDT), aka the face fry, when an opening comes up. I said I thought my face looked OK.

"Is she coming in?" I asked.

Yes, he said, she was coming in.

She basically said what the resident said: The PDT, in removing a layer of skin, kills skin cancer cells. In addition, she said, they now recommend a follow up six weeks after. The resident zapped some places on my forehead and out I went to make the appointments. I'm not crazy about this but the literature says it is safe. And I have to believe the doctor.

The past two nights I have put on the cream and slept in the purple exam gloves. I usually pull them off at some point in the night and wake up with them next to me. The goal is to light up the red spots which can turn into cancer and the ones that may already be cancerous. The spots will then turn brighter red and then hopefully either dissipate or fall off before I pick at them. I need to do it for three weeks.

I have a huge purple bruise on my left thigh and a smaller one on my wrist. It only hurts a little when I sit.

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.

Dermatology doubleheader and alphabet soup

A post from a year ago, A Little More Pain Today, came up on Facebook with a photo of me standing right near where I'm sitting at Diane and David's house in Newton waiting for more pain to be inflicted on my face this afternoon.

The funny thing is, I do not remember what it was. They all blur together.

The theme for this week is alphabet soup, ECP and PDT.

Internal sunburn yesterday, external today.

ECP: Extracorporeal photopheresis, what I refer to as the blood therapy or sometimes the blood thing, for my graft vs. host of the skin. I talked to another relatively new (to me) doctor yesterday, our second meeting. Sometimes they don't know what to make of me. I said I had played tennis that morning and over the weekend ran (or whatever you would call it) a 10-K race.

It is so much better with the angio needle. I was even able to get up and go to the bathroom without worry of it infiltrating. A new nurse (who had come over from Mass General) took care of me. He was a character, telling me it was his first time but he would try to do a good job. I don't remember exactly what I said but I gave it back to him.

"Like returning a slice with a slice," I said.

Today, PDT, or photodynamic therapy, to remove precancerous cells and any tiny cancers from my neck and face: "a treatment that uses a drug, called a photosensitizer or photosensitizing agent, and a particular type of light. When photosensitizers are exposed to a specific wavelength of light, they produce a form of oxygen that kills nearby cells."

This hurts a lot. I don't know why people do this sort of thing cosmetically. You hold a tiny blower in your hand and move it around while you feel like you're getting the worst sunburn ever. I can't remember the exact time. Maybe 16 minutes. Maybe I should imagine that it is wind blowing on a beach.

Oh and I might also get a biopsy on a weird spot on my calf. Just as the one on my ankle has healed nicely.

Then back home around four. Nothing much tomorrow because I will be carless. That squeaking sound turned out to be a call for new rear brakes. Better write up a storm to cover that.

In between, a good dinner with Diane last night and upcoming brunch this morning with Rook, who is going to be kind enough to drop me at the dermatologist's office in Brookline.

The procedures will not be fun but it's always nice to see my primary dermatologist, Jennifer Lin, who will weigh in on how she thinks the ECP is going. She's the one who used to talk to me about dating. While freezing spots off my skin. Now she is happily married and a new mother. I assume she will ask about me. I'll have to think about which stories to tell her this time. Or not.

Frustrated and annoyed

Sometimes you can be chugging along dealing with the larger things and then a little thing can get to you.

For example, yesterday I was frustrated to the point of tears in trying to get a dermatology appointment tomorrow after my checkup and ECP today. I started working on it Friday and by yesterday had still not heard back from the nurse who was going to see if someone could look at a spot that worries me. The practice manager who always took care of me had left and there didn't seem to be anyone in charge.

It was a microcosm of the confusion that can result when you hear different things from different doctors. It was REALLY upsetting when it happened in the hospital when something serious was going on. Not so much now, but still.

Ellen, the PA at ECP,  said she didn't like the look of a spot on my face.
The dermatologist who did my most recent Mohs surgery said not to worry, it would come off in the PDT that I got a few weeks ago. It did not come off, although the rest of my skin peeled.

 I called the office and learned there were no openings. Then the nurse called back and said a doctor would see me Friday. Then I wrote Dr. Linn and said I was incredibly frustrated and she said she was so sorry and got me an appointment for tomorrow.

I arranged to stay over at Diane and David's and called MART (transportation) this morning to say I would only be going one way today and would be coming back tomorrow.

The vendor then canceled the trip. Apparently they have the right to do that because it is not worth their while to go one way. The call taker said I might not be able to get to my appointment on time but she would put me on the "same day" list and try.

Then I looked up what Dr. Lin said she thinks it is – a seborrheic keratosis – which she said would not be expected to come off with the PDT. It looks like it's not even harmful. But she still got me the appointment, just in case, I guess, and now I have changed everything around and am not even sure I can get there. Unless I drive, which I really don't want to do.

Altering schedule creates domino effect

I think I forgot to say that they stretched out my internal sunburn even further, to every three weeks. They are pleased with the progress that I have made in the year that I have been doing this so that is why I get to go less frequently. (I have been trying to think of a good shorthand for the blood thing which is technically called ECP and since Dr. Marty asked "How is the internal sunburn going?" I think that is a good one.)

The memory feature on Facebook came up with a photo from a year ago when I was in a bed getting my first treatment. When I started, it was twice a week. I could not believe I was going to have to do this for three months. But as happens, time flew.

A friend wanted to know how long I would be doing this.

He asked, "For the duration?"

I said yes, though hopefully with decreasing frequency.

It is good to cut back even more, but it creates a domino effect. I need to call or email:

MART to change the dates of my rides,

Dianna, who schedules for Dr. Alyea and Melissa, to change the date of my checkup which I had made for this week when I am really going next week, and

Dr. Liu, an endocrinologist who I am seeing to talk about my bones.

I'm not sure I mentioned her. Dr. Alyea does not want me to get off prednisone. Never ever. It is only a small amount – 1 milligram – but as previously said, since it lowers the functioning of my immune system, I also take two preventatives, Bactrim and Valtrex. I am seeing Dr. Liu because prednisone can also weaken your bones and presumably she is going to suggest something to take to strengthen them.

When Dr. Alyea brought up this idea, he asked, "Have you seen an endocrinologist?" Which he followed by saying, "You've seen just about everyone else in here." I've also seen a few whose names begin with the letter L:

Dr. Stephanie Liu, dermatologist, Dr. Jennifer Linn, dermatologist, and soon, Dr. Eva Liu, endocrinologist.

Dr. Linn missed a spot on my face when she did the PDT (photodynamic therapy). It is a little thingie that I catch myself picking at. Ellen, the PA at ECP, said she didn't like the look of it. Jennifer (Dr. Linn) said she would get it with the face fry, but it didn't happen, and I don't think it should be left unattended because these things can turn into squamous cell cancer. Or maybe it already is.

I call most of these doctors by their first names except that I can never seem to be able to call Dr. Alyea Ted. Dr. DeAngelo was always Dan. Dr. Alyea is just more formal. Melissa will say about something, "I'll have to ask Dr. Alyea," never Ted. I don't think I ever heard anyone use Dan's last name. Well, I got that out of the way.

Sunday I was feeling forlorn and missing my children. A serendipitous encounter helped me get out of it.

In the parking lot at the Hampshire Regional YMCA, where I had gone for a pilates class, I pulled in next to a car where a mother was talking to her little girl as her daughter was getting into the back seat next to a toddler in a car seat.

"We will not play such and such when we get home," she said. (I can't remember the name of the game.) "You've already played it enough."

When I got out she was standing behind the car, looking soooooo exasperated.

We had a moment.

"I'm so glad I saw you," I said. I told her I was missing my grown children but that her situation made me remember it was not always perfect.

She said she was glad to see me too.

"I keep reminding myself that they will not be 2 and 7 forever," she said.

I told Katie about this over the phone that night. I said she and Joe were the WORST when I had to take them both to the grocery store. Somebody would always push the cart over someone else's feet or they would argue about who was going to push it and I would be so embarrassed at the checkout line because I could not get them to stop. And then they would argue about who started it. To this day that has not been resolved. (I'm not sure where Ben was in all of this.)

The scenes with Ben and Joe were different. Joe would go out in the driveway to play basketball or the game they created, tennis ball (with a bat and bases) with Ben and his friends or with Ben alone and I would say, "Don't make him cry!" Because that is what sometimes happened.

Katie said she remembers me saying, not just at the grocery store but whenever they were acting up or wanted something I wasn't going to give them, "No, and no, no, no no, no..."

Bad day at the Big Y in South Hadley

Yesterday I brought my oxycodone prescription to the Big Y in South Hadley so I could take it with me to Boston for pre-medicating before my ECP. I do not want to haggle with anyone about the degree of my pain when they don't believe I know what I need.

 At the pharmacy they said to go shopping while it was getting filled. I wanted to get a head start on shopping for my seder because I will be out of commission with two days in Boston for alphabet soup. ECP (blood sucking) today and PDT (face frying to get rid of precancerous spots on face and neck) tomorrow.

 I looked in two places and discovered this Big Y has only have a fraction of the Passover food that you need. Since there are not that many Jews in South Hadley, we should have not that much food. I should have known better and gone to Stop and Shop.

When I went back to get the prescription, they said it would take a few more minutes for the pharmacist to check it. I balanced on my toes. The pharmacist came out and said that because of the state's new stricter rules on opiod prescribing, I needed to have a cancer diagnosis. It is part of federal and state efforts to limit the use of opiods for chronic pain. Because of the effect that Tylenol and NSAIDS on my system, my doctors prefer oxycodone for me in the case of severe pain. If I have a headache, I'm not going to pop an oxycodone. But if you saw how long my last prescription lasted, you would see that I use it sparingly. When she looked in the computer she couldn't even see the last time I had filled it. In any case...

If the scene at the pharmacy counter were a play by Harold Pinter, there would be a big pause. Well, there was a big pause. The pharmacist was apologetic. I said (duh) I've DO have a cancer diagnosis. I've been coming here for 13 years to get my cancer meds. My prescription came in on Dana-Farber CANCER Institute letterhead.

Under the new rules, it has to say what kind of cancer you had, or have. They went to call Melissa. Apparently I could get a smaller supply at that point or get the prescribed amount after she verified. I wanted the full amount so I went home. Then she called and said Melissa had verified I had AML. She said I could come back. By that point I was too tired. And also I wanted to watch the New York primary results come in. I'll have to go back today.

But first I'm going to play tennis and hopefully forget about it for an hour and a half on the courts.

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.

First world problem, real world problem

It turns out that I actually did not have a stress fracture, although when I saw my podiatrist today he said it was a good thing that I wore the boot because I was probably on the way to getting one, and catching it early nipped it in the bud.

When I went for a little test run a few days ago, my big toe really hurt, though. Even when I wasn't moving, I got shooting pains in it. So today I asked for, and got, a cortisone shot.

Dr. Wolf said I need to ice it and baby it for a couple of days, after which I can get back to tennis. I said I was disappointed because I thought I could play tomorrow.

As I was leaving, I shrugged and said, "First world problem, I guess."

He got a kick out of that and said he had never heard it. I hadn't either until Katie told me about it being a popular topic on the internet. I think I am going to email him this link that explains it. The examples of first world problems contrasting with real world problems can really make you stop and think.

Changing the topic now from feet to face, here is an update on the natural progression after the PDT. As expected, my skin is peeling, and I have to admit it is difficult to stop myself from helping it along. Katie has caught me fussing with the things on my skin and has said, "MOM, stop doing that," and so I need to internalize my daughter and keep my hands off my face.

It reminds me of the bad old days of getting so sunburned that my skin would peel off in sheets, which I thought was really cool and also a sign that tanning in earnest could begin. In addition to sunbathing, I was also a lifeguard, and that added to my sun exposure.

You might not think it when you look at me now, but my skin is actually fair. It darkened after chemotherapy, a process known as hyperpigmentation. In the off-season when I haven't been outside in the sun, sometimes people wonder if I've gone on a vacation.

They ask, "Where did you get that tan?"

It would definitely be a conversation stopper to say that I got it in the hospital during chemotherapy, so I make up some fabulous island destination.

Only kidding. Mostly I just shrug my shoulders and say that I don't really know.

A bad sunburn, minus the sun

Yesterday's PDT wasn't as bad as the one the previous year, and in fact each one gets easier. Dr. Lin said that is because my skin is looking better and there are fewer areas to treat, which doesn't quite make sense to me because the blue light is directed at your entire face.

In any case, my memory had deceived me, because I wrote in my last post that I thought it was only five minutes (I corrected it) but it was actually 15 and so I wasn't entirely mentally prepared.

Although the time under the lights was easier, my face felt like it was on fire afterwards. Comfort food made by Margaret – shepherd's pie – and one of my little pills took the edge off. While we sat on the kitchen floor with her dogs, Margaret humored me by letting me show her third installment in the Marcel the Shell series, introduced to me by Joe and Katie.

Margaret giggled. I giggled. I do it every time. It can only help. I know I am not alone because as of this minute, it was viewed 2,433,667 times. So here it is, Marcel the Shell with Shoes on, Three.

On a more serious note, it was an incredible day to be in Boston on the day the city's beloved and longest-serving mayor, Tom Menino, died. There was such an outpouring of love, everywhere you looked and listened, even on the Pike, where signs at the eastern end read, "Thank you, Mayor Menino."

Naturally I couldn't take anything for my burning face while I was driving. I made it home, ran some errands and got Maddie from "Aunt Jane" and "Uncle Jim," who now take the same kind of good care of Maddie as Jane did when babysitting my children.

I wanted to see if I could do without another pill, but when I noticed that I was all clenched up in pain I decided that it was time. For Halloween I am playing the role of someone who fell asleep while lying in the sun on a very hot day. Luckily, although the treatment was not fun like a day at the beach, it should have the opposite effect – preventing skin cancer instead of creating it.

Specially seasoned, cooked well done

Sometimes it helps me to give funny or offbeat names to the things they do to me – never to the really serious things, of course – but more to procedures at the maintenance level.

For example, I call therapeutic phlebotomy "blood letting," which is what happens when I go every other month to have about a pint of blood removed to reduce the iron overload that resulted from multiple transfusions.

The name game has come to mind because tomorrow I go to Boston for my annual face fry.

The term is actually photodynamic therapy, or PDT, and my dermatologist uses it to treat my face for spots that might turn into cancer. It is definitely better than getting more skin cancers, and by the way  I think I have another squamous cell, this one on the side of my hand, so I will be surprised if she does not biopsy it.

Marinating last year

Here is how the American Cancer Society describes PDT when used to kill cancer cells:

Photodynamic therapy or PDT is a treatment that uses special drugs, called photosensitizing agents, along with light to kill cancer cells. The drugs only work after they have been activated or “turned on” by certain kinds of light. PDT may also be called photoradiation therapy, phototherapy, or photochemotherapy.

Depending on the part of the body being treated, the photosensitizing agent is either put into the bloodstream through a vein or put on the skin. Over a certain amount of time the drug is absorbed by the cancer cells. Then light is applied to the area to be treated. The light causes the drug to react with oxygen, which forms a chemical that kills the cells. PDT might also help by destroying the blood vessels that feed the cancer cells and by alerting the immune system to attack the cancer.

The period of time between when the drug is given and when the light is applied is called the drug-to-light interval.

After a nurse covers my face with the chemical, I sit for about an hour and a half, reading a little through the slits in the foil that covers my face. Then the covering comes off and you sit under the light. That part takes 15 minutes and hurts more than the worst sunburn you can imagine. Moving a cold air blower around with your hand helps somewhat in each area that you target.

She is also going to do my lips, woo hoo!

Afterwards your skin is red, blotchy and painful. You're supposed to avoid the sun, so this is a good time of year to do it.

In the past I have had to take something for the pain, but I'll see how I feel. I'll be going to Margaret's afterwards, and maybe the good company and good food will take my mind off of it.

 I'll drive back Friday morning, well done.

Dermatology report

It was a good thing that when Dr. Lin told me Plan A for how to resolve the squamous cell on my lip, she quickly switched to Plan B, which was to NOT do Plan A.

Although the cancer is luckily not deep below the surface, it does cover a good portion of the top left part of my lip, so if I had another Mohs procedure, I would end up losing a third of my lip. Say what? I told her that the thought made me queasy. She said the lip would mostly regenerate itself, but still...

In the meantime, would I need to color in the area with lipstick?

Well, Plan B, which she prefers, is to burn the skin off that part of my lip the next time she fries the skin off my face. A lovely alternative, but a better one. The technical term for this procedure is PDT, or Photodynamic Therapy, which sounds a little better than "face fry."

I have set up a consult with Dr. Neel, the Mohs surgeon who removed the squamous cells under my eye and on my neck. She assured me that he would not simply start slicing away. If Plan B goes into effect, I would get the PDT some time over the winter.

While I was there, she froze some spots on my face and my hands. ZAP ZAP ZAP! I made little squealing sounds mixed with ouches. "I hope you don't mind the sound effects," I said. "No," she replied, "That makes it much more dramatic."

Saying I looked tired (which I was), she encouraged me to go to my sister's house and drink some water and get some rest. I went over and had a turkey sandwich and some water. I didn't really feel like taking a nap, so I went to Starbucks and headed out. 

I had to stop at the first rest area and take a nap. There were other people snoozing in cars, but I doubt they had only traveled 15 minutes or so. Oh well, it worked for me.

This morning I am heading down to New York, but I won't have to drive all the way because I am going to park at Ben and Meghan's in Fairfield and then Meghan will pick me up on her lunch hour and take me to the train. Thanks, Meghan! 

Testing, testing

I like to group my appointments in Boston in clusters so that I can minimize driving back and forth, but when it comes down to it, it can amount to a tiring day or two.

I have one appointment on Wednesday and four on Thursday, like so:

On Wednesday I go to Mass. Eye and Ear to see the specialist who has been watching out for Graft vs. Host of the eye. When I started seeing him, my eyes felt scratchy, but with twice daily drops of Restatis, they feel fine now, so I think I'm OK. Sometime that day I hope to see Katie and check out her new digs, which I haven't seen yet.

Thursday is the busy day. I start out in nuclear medicine with a  two-hour "gastric emptying and motility scan" to try to find out why I am still throwing up. I'm not sure what they do, but I have the impression I might come out glowing.

I thought I was done with throwing up, but unfortunately it has come back at the most inappropriate times. Yesterday I went to a tennis clinic, ran into the bathroom to throw up, and then returned and finished the clinic. Melissa said the endoscopy ruled out anything serious, and this could be something that can be fixed with a pill. Also, she said that after transplant this sometimes happens to people like me who immune systems have been manipulated.

I will have to tell Dr. Alyea, a fellow tennis player, that this is harming my tennis game. I play tentatively because I am afraid I might jar my insides. I have even been demoted from the more competitive Friday 9 a.m. tennis round robin to the easier 10:30 one. In the overall scheme of things, this is no big deal, but as a competitive person, it bothers me. My father would understand. I have a match coming up on Sunday and hope to find a solution before that.

Next up on Thursday is my check-up with Melissa, followed by "therapeutic phlebotomy" in the blood donor center. The plan is to take out some blood to lower the amount of ferritin – stored iron – in my liver, a substitute for taking the nauseating Exjade, which adds to my throw-up problems. The blood will be donated to the trash.

After that I go to another location to see my dermatologist, who has scheduled another PDT, or photo-dynamic therapy, to burn the top layer of skin off my face in order to get rid of the little pre-cancerous spots that keep popping up. This is a fun procedure where they put a chemical on your face, wrap you up like a mummy and have you sit there for an hour before putting you under a burning light.

On Saturday I will go to Meghan's wedding shower looking like a lobster. If anyone asks, I can tell them I took a quick trip to Puerto Rico.

Red-faced

The face fry, aka PDT, or photodynamic therapy, wasn't as bad as it was the two previous times, but it still wasn't as much fun as lying on the beach when it comes to getting a burned face.

Dr. Lin said it is more tolerable each time because there are fewer pre-cancerous spots. She puts a chemical over suspicious spots and the light reacts to them. After the potion goes on, her assistant seals it in by first applying plastic wrap to your face and then covering that with silver foil. She cuts little holes for the eyes, nose and mouth and then you sit there for about an hour.

I was perfectly happy sitting there reading The New York Times through the eye slits, but as the time approached I could feel myself tensing up. It's interesting how you can observe your own body language. I crossed my arms and hugged myself and began to feel cold. They didn't have a blanket, so the assistant covered me with two towels, which didn't help much.

After it was over, I had a good distraction from the burning on my skin: dinner at Margaret and Nick's house, where we had delicious homemade pizza and watched the Scott Brown/Elizabeth Warren debate. Margaret and Nick are just as consumed as I am with the upcoming election, and since we're on the same page, we had a good time talking to each other and to the TV and watching the post-debate coverage.

Back home, my face is still burning, though less so each day. My skin has turned blotchy, making me look as though I have a bad case of acne.

I bumped into a woman yesterday who was in one of my baby play groups. Our babies had the same birthdate, Sept. 13, 1985, and there was her "baby," Leah, with her looking over the photos of her recent wedding. To me, Debbie, the mother, looked pretty much the same. But oh vanity of vanities, I imagined her looking at me and wondering, "What happened to her?" Actually she's a nice woman and was probably thinking no such thing, but a little self-consciousness and can a long way.

In a few days, my skin will begin to peel, and I'll have new skin.

Dr. Lin wants to repeat the procedure once a year. I can't wait! But hey, in terms of other things they've done to me (most notably bone barrow biopsies) this is a piece of cake.

Back to Boston

In keeping with the theme "it's always something," I am heading back to Boston today – after being there a week ago – to see my dermatologist for photodynamic therapy, or PDT, in which the top layer of your skin is burned off to remove precancerous cells.

I try to coordinate appointments, but it didn't work out this time.

This is my third PDT. Maybe, like the third Caesarean section, it will be easier than before because my body will not be quite as freaked out as the first time. Maybe not.

The procedure consists of having a medication applied to your face (or wherever) and then sitting under a scorching hot light that feels like the worst sunburn magnified. Afterwards, your face is bright red. After a while, the skin peels off and voila, you have new skin.

This, of course, is better than getting the skin cancers that I have had twice. And your skin looks oh so beautiful.

I am staying at Margaret's tonight and coming back tomorrow. I have already warned Margaret that I might whine. She said it was OK, but just to make sure that it is not too bad, I have packed a little of my favorite pain medication.

Doctor double-header

I saw two specialists yesterday in Boston, but although it was like a double-header, I didn't have the luxury of staying in my seat.

One appointment (with the eye doctor) was at 10:45 in downtown Boston, and the other (with the dermatologist) was at 3 in Chestnut Hill, on the outskirts of Boston.

I thought I would have a bit of time in between, but with travel time and waiting time, I only had about an hour and half.

I spent Monday night at Diane's, then took the T down to Government Center and walked to the Mass. Eye and Ear Infirmary (on the campus of Mass. General) to get checked out by Dr. Reza Dana, a specialist in Graft vs. Host of the eye. Walking quickly down Cambridge Street in clogs turned out to be my exercise of the day.

When I last saw him four months ago, Dr. Dana said it was unclear whether I was developing GVHD of the eye. Yesterday he said my eyes looked much better, telling me to continue with frequent use of eyedrops (including the prescription drug Restasis) and to add warm compresses for 10 minutes twice a day. Haven't quite gotten to that yet.

Then, more clogging back to the train and enough time at Diane's to eat and read the paper. As I left to get in my car to drive to Dr. Jennifer Lin's office, I told Diane I would stop back and take a nap if I was too tired to drive home. But, no surprise, I had to wait, so I laid my head against the wall in the waiting room and took a nap.

I should list "napping in noisy places" as a special skill on my resume.

I originally saw Dr. Lin for possible GVHD of the skin, and she said yesterday she decided I definitely do not have it. So I guess I only have GVHD of the liver.

What I also have is at-risk skin from all my previous sun exposure, chemotherapy and a weakened immune system from the prednisone.

She was happy with the results of the Photo Dynamic Therapy (PDT, or, as I like to call it, face fry) which she did last month, but she said she still saw problem spots that could turn into skin cancer. She froze some (ouch!) and then scheduled another PDT session for three months from now.

Dr. Lin and I have a mutual admiration society; she always compliments me on my jewelry, and I compliment her on her shoes. Yesterday I told her I loved her maroon suede boots (worn with matching maroon tights), and she said she liked my silver watch with the band made out of blue glass.

We have fun with this, but still...Only three months until another PDT session?

I hope she will be wearing some really cool footwear to take my mind off of the burning of my face.

My glamor shot

I guess there is no sense of posting a photo of yourself if you look bad, but it's another story when you look really really weird and scary. So here I am, looking weird and scary.

I posted a similar photo about a year ago when I first had Photodynamic Therapy, or PDT, and here is a similar one taken yesterday while I was prepared for the procedure at the dermatologist's office in Boston. First, the technician applied a light-sensitive cream, covered me up, and had me sit in a darkened room to incubate for about an hour.

Then she put an intense light on my face for 15 minutes while I waved a hand-held cold blower on it. When it was over, I was bright red, as though badly sunburned.

The purpose is to remove pre-cancerous spots before they turn into something more serious, as a couple already have. This kind of spot is likely to appear at some point in people like me who have a lot of sun damage, but chemotherapy sped the process up.

When I was done, Dr. Lin came in and and used a cold gun to zap some spots on my hand and a few left on my neck.

Not a very fun visit, although she is so nice that her personality always helps on visits like these.

During the incubation period in the dark room, there was enough light for me to read the paper a little, but that got tiring, so I amused myself by texting the photo above to some friends. One responded that I should think about how good my skin will look after the skin peels off, perfect timing for our high school reunion in May.

I wrote back that the procedure would also make me look 18 and do my hair for me.

If only.