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.

Add two appointments, take away one

On Monday, I have a 9:45 a.m. check-up with the tongue doctor (more formally known as head and neck oncologist Laura Goguen), followed by a check-in at 1 with Melissa. It was in the back of my mind to try to move my Wednesday photopheresis to the same day at 3, but by the time I got around to it they were all booked.

They are very busy. It's not that much fun, but apparently it's popular.

Melissa said I could just skip the week's ECP rather than returning on Wednesday. I asked if the cumulative benefits go from week-to-week or more over an extended period of time, and since she said the latter, I'm not going to worry about it.

I only see Dr. Goguen once a year now. At my last visit I asked Dr. Alyea if I could skip those visits and just let him and my dentist take over, but he said, no, she can see things the other people can't. Both he and the dentist haven't seen anything suspicious, but when Dr. Goguen's office canceled an appointment that I had a couple of months ago – and couldn't reschedule until next week – I got a little concerned in light of what happened to Ann almost a year ago after she developed a squamous cell carcinoma on her tongue.

But since two doctors have seen it and said it looks fine, I'm not going to worry about that either. Besides, it's too nice outside.

I'm actually relieved that they couldn't tack on the ECP on Monday. It would have been a super-long day. I'm getting picked up at 7:45 a.m. and wouldn't be back until 9. It will be long enough as it is; I didn't book the ride back until 3 p.m. because I never know how long I'll have to wait for Melissa and Dr. Alyea. And I wouldn't want them to leave without me if I said 2 and then I was late.

Getting home at 5 will be a long enough day, but at least it will be light. Hopefully I won't have any stories to tell about my ride. But I wouldn't count on that.

Another loss

Ann Gregory

I was going to write about my running around since Friday: New York (Central Park, Chinatown, Broadway, the Museum of Modern Art), Providence, Boston (to pick up Katie), and finally home today.

I was also going to post some photos, but my heart is not in it, because today, I read this post from Ann Gregory's husband, Chris, on her blog, Ann's Fight: "At 9:30AM this morning my best friend, wife, lover and radiant bride took her last breath.  The light is gone from the world."

I have been following that fight since starting my blog in 2008. Like many readers who had never met her, I felt as though I knew her. Our struggles were similar: leukemia (hers was ALL, or Acute Lymphoblastic Leukemia), transplant, getting back to normal, relapse, Graft vs. Host Disease, prednisone...

Some years ago, it seemed like she would be OK. She and Chris were so happy when they bought their home. She planted a garden. Returned to school. Dreamt of having children.

PJ (Patricia) talked to Ann every Sunday. Because PJ lived near enough, we became real friends. We talked to Ann about coming East from her home in Baton Rouge, Louisiana. Or maybe, we thought, we could meet half way. Have a cup of coffee or tea. Support each other in person as we had done virtually. 

Ann and Chris called me when a squamous cell cancer was discovered on her tongue and had to be removed. They knew I had gone through something similar, and they wanted to talk before the surgery. Only mine was pre-cancerous, discovered early when I was getting a tooth pulled. (A real pain, getting 11 teeth removed. A stroke of luck.) I told them it was kind of weird to have a piece of your tongue scooped out but not too terrible.

It was for her, though, because that squamous cell carcinoma spread through her system and lead to her death at the way-too-young age of 40.

Her Facebook wall is filled with pictures of her young and healthy, and, even when she lost her hair after the last barrage of treatment, still with that radiant smile. Throughout, expressions of heartbreak.

Her friend Jody Schoger, who has been writing eloquently about her own cancer fight, said this:

"I'm grateful for the life of Ann Betts Gregory -- her light, a keen intelligence illuminated by such a generous and kind soul. She was funny, impish, loyal. She had more cancer in her adulthood than should be possible -- pure testament to her determination and strength."

Four of us had bonded through our leukemia blogs, three of us with AML.

Dori, who I knew through her husband Jim's blog Run for Dori; PJ on The Plog, Ann, and me.

Now there is only me.

On the other hand...

On the left hand, the spot I had been scrutinizing did indeed turn out to be another squamous cell cancer.

On the left arm, the other spot was squamous cell also.

It had been two weeks since the punch biopsy when my friend Nurse Jo was kind enough to remove my stitches at her dining room table yesterday. If it happens again, she is going to remove them a little earlier than two weeks, because my skin had started to grow over them. As the child in me says: big ouchies.

I thought the dermatologist had forgotten about me, but Dr. Scott – the dermatologist who I now see in addition to Dr. Lin – called shortly afterwards to say she had been on vacation, which was why I was only hearing yesterday. Sorry if this gets confusing; it is definitely difficult to keep all my doctors straight.

The spots are again thankfully in situ – on the skin. They are mostly gone, but one went a little deeper than the she had gotten, and one had spread a little further. So after they heal I will apply a chemotherapy cream called Efudex (fluorouracil). This will turn the areas very red, but then hopefully that will be the end of it.

Sometimes I look at my hands too closely, focusing on what I do not like. I have been told that no one would even notice the blemishes that I see, because no one examines them up close like I do. But this kind of scrutiny bears rewards, because I am the only one who noticed these two problematic areas. I call it my squamous cell radar.

 I'm lucky that they grow slowly, because I feel that Dr. Neel – another one of my many specialists – dismissed the spot on my left arm when I showed it to him after he had performed Mohs surgery on another area. I think he was just ready to move on to the next patient.

He said it was a keratoacanthoma, a skin lesion that may resolve on its own or which may be squamous cell cancer in disguise. When I showed Dr. Scott one like it on my right arm, she said she would remove it and biopsy it just to be careful. When those results came back positive, I called Dr. Scott to be seen for the similar area on my left arm and the one on my left hand.

Scrutinizing my skin sometimes feels like a crazy-making thing to do, but in instances like this it has turned out to be a good thing to do.

Blood tests, biopsies and other fun things

I had two more possible squamous cell cancers removed today in a "scoop biopsy"  – one on the top of my left hand and the other on my left forearm – mirroring the one on my right are from three weeks ago, so that if nothing else I will have symmetrical little scars.

In the "what was I thinking" department, I planned to go home tonight, but I am staying in Newton instead. I forgot how much these things sting for at least the first 24 hours. For some reason the one on my hand is also itchy, so I took an oxycodone and a Benadryl. I definitely expect to sleep well tonight.

The dermatologist also froze several spots on my face, proclaiming that I had gotten the royal treatment.

Earlier in the day I had a checkup with Melissa. I had been a little anxious when a previous test revealed slightly lower numbers. They are still not back to their most recent high,  but Melissa said not to worry, they are all fine. Since I am not trading in money and the only investment is in my comfort level, I will have to let it be.

White count: 9.1 (normal=3.8–9.2)
Hemoglobin: 11.3 (normal=11.9–15.0)
Hematocrit: 32.8 (normal=34.8–43.6)
Platelets: 127 (normal=155-410)

This was going to be my big three-month interval between appointments, but I went back after two anyway with concerns on my mind. We're just going to keep it at two next time because there are so many things to monitor.

Next Monday I have two more appointments with different specialists, so back on the Pike I will go.

Back in Boston for another biopsy

Well, I've made my last college dorm bed.

Any mother who's completed the ritual knows how important it is. Wasn't it just yesterday, you wonder, when you packed their Barbie or Teenage Mutant Ninja Turtles lunchbox and put them on the kindergarten bus?

I'm past crying, but it still tugs at my heart.

The past few days have been very busy. My birthday Saturday in Wellfleet couldn't have been nicer. The day started, as usual, with me getting up early and going down to the Flying Fish for blueberry muffins and a cup of special Flying Fish coffee which I drank on the way home. Ben and Meagan went to the flea market and then later they went with Joe shopping downtown. Katie and I swam and walked, and Katie got in a run. We had a cookout and then – surprise! – a cake. I got a really nice pair of earrings and a little cutout of a dog on a plaque that read, "When all else fails, hug the dog."

While I have nightmares after watching "Breaking Bad," I had pleasant dreams after my little party.

Moving out the next morning went seamlessly, minus my notorious lollygagging and the usual subsequent nagging by Joe or Katie followed by digging in on my part. Maybe my birthday brought me some wisdom about the need to sometimes move along more quickly...or maybe it was just a good day.

We drove home Sunday and then Katie and I turned around Monday to move her back into school. It took most of the day Monday to get her stuff into her room. At night, we ate at Veggie Galaxy, which serves traditional diner food made with vegetarian and vegan ingredients. Since it was a diner, we felt like we needed to top off our meal with delicious Boston Creme Pie.

Yesterday I saw Dr. Lin, my dermatologist. She did a punch biopsy on my lip; she also did one on a spot on my wrist.

"You're like a garden," she said. "Of delights."

She thinks the spot on my lip is either Herpes or another squamous cell carcinoma. The results may be back by Friday, but in any case she wants to see me next Tuesday.

She said  I could drive back home, but as the novocaine wore off, I quickly realized that would not be possible. It hurt so much that tears sprang to my eyes as I sat in traffic on Route 9. I went straight to Diane and David's, took some pain pills, and soon felt better.

It's Wednesday morning now. I'm filling up on coffee and am about to try going home. If I get tired, all my favorite rest stops await me.