Of vampire bites and another bad trip

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How to not fall off a bike, and other observations

Friend watches me read outside Airbnb, Wellfleet

I took a little break, this time on another getaway, not as exotic as Costa Rica, but beautiful, and according to a friend who has traveled around the world, one of the most exotic places he's seen.

He was referring to Race Point, in Provincetown, and the bike ride we took through the dunes. Savoring the spring blooms still out, the beach flowers fragrant, the distinctive smell of the sea...we stayed for a while after finishing the loop. (Detouring here: Did you ever wonder how to describe that ocean smell? I looked it up and found that from poets to biologists, people had plenty to say. Why does the sea smell like the sea?, from Popular Science, takes the romance out of it but is an interesting read.)

I'd only been biking a little, and for some reason, though I went to a lot of spinning classes at the Y last year, it didn't speak to me this year. I do something most every day, so I think I filled those slots with yoga and a little more tennis because I joined an extra group.

(Tennis detour: I'm more relaxed as a "fun" player and during my outdoor summer league season with the Holyoke Dolls than in the regular leagues.  My record is pretty good with the Dolls and not so good anymore during indoor league tennis. Yesterday I played twice, first with my Monday morning group, and last night at Forest Park for the team. I was worried that I would be tired, but despite the heat and humidity, I was energized and played really well, getting balls out of range, I think  surprising the other players and also surprising myself. My excellent, fun, partner and I were a good team; I set some up and she smashed them. It was very convivial, more so than indoors, with chit chat on the side changes and laughter between two courts. We won, 6-1, 6-3. I wish this and other summer scores counted in my rating; scores in this league don't count. But, rating, shmating, it's like a test score that might not reflect what you do. I kind of understand why I didn't get asked to play this year on a senior team for which I didn't earn a win, but still, despite the "maturity" of advancing age, it's hard to always separate self-worth from tennis-worth. That's why last night was great, and it's also great that George says I'm playing my best tennis ever. It must have something to do with the light therapy on my blood, the extracorporeal photopheresis, although to be honest I can't exactly explain it except for saying it's loosened up my skin and made me more flexible.)

Therefore if I had fallen off my bike tottering in granny gear going up one of the Race Point hills, I might have had a better fall than my past crashes. But maturity overcame my desire to prove a point  when I was going so slowly up a steep hill that I could have lost my balance and fallen off. I GOT off and walked to the top, congratulating myself on knowing when I had reached a limit. I can't think of other times when I've gotten off; I didn't love doing it, but it was better than falling.

Another unusual thing for me was talking to a cat. That's Fiddle, the dog-like cat who hangs out at the sweet Airbnb where we stayed in Wellfleet, a short walk to town. Besides my cousin's (late) cat, Chloe, she's the only dog-like cat I ever knew. She sat with me when I read. I didn't do much reading, though, because I was either doing some work or doing outdoor activities with the friend who wishes to remain anonymous. Highlights included a hike around Great Island and walks along the beach and a last-day bike ride starting on the bike path in Wellfleet and then turning left for a ride to Coast Guard Beach.

We watched a couple playing with their grandson on the beach. It made me wonder how I can be a grandmother now, while, just the other day, I was in high school, riding around these beaches in a jeep with that first love who creeps into my thoughts in places that are connected to him. The beach can do that to you. I'm pretty sure that when we walked along the beach separately, me walking through the shallow water and him on the harder sand, that he was having his own thoughts too.

Entrance to Coast Guard Beach, Eastham

When we were exiting up the path, the grandpa was walking down with the lunch that he had gotten out of the car. I asked (jokingly) if we could have some. We got to doing the "where are you from" thing. He said he lives in Munson. I said I used to work for the newspaper (The Republican) that covered that area. He asked if I knew Jim Gillen. I said of course! He was an editor at the paper. The grandpa (Andre, I think, said he is a lifelong friend of Jim's and was staying in Jim's Cape house. He asked if he could take my photo and text it to Jim. I said of course; when he sent it I wrote a cutline saying "could I please have an extra inch?" That's how it used to go at the paper, with space getting smaller and reporters begging for more space.

It was the last week before the crowds arrive. The bike path can get crazy in season, but we had it almost to ourselves. It made me more relaxed because my concern on crowded bike paths is not so much falling, as it would be on a hill on the road, but bumping into kids or having kids bump into me.

I'm looking forward to going back in a couple of weeks, this time to Diane and David's, with my three (plus one grandchild). It took a lot of engineering to try to get everyone together, but I think that, with different cars, we'll manage at least one dinner and part of a day together. A friend took everyone on a cruise to accomplish a similar feat, but I'm not quite up that.

Fingernails, toenails, have stories to tell

This morning, when doing my nails, I thought about how my fingernails have stayed strong while the rest of me was falling apart. People have noticed. One of my healthcare providers pointed it out during cancer treatment.

I don't know why they're strong. I don't mess with them much...except when I occasionally go crazy and pull the skin off the side of a fingernail or tug on a dangling cuticle. As for the nails themselves, maybe, like a plant that is not overwatered, they are happy with benign neglect. I let them get a little too long, notice they don't look so great, cut off the tops, and file them into a curved shape.

When I did them, I had a flashback to when I was so weak that I couldn't do them. That was during my three and a half month residence in Brigham and Women's Hospital after my fourth bone marrow transplant. Diane did them for me. She knew that I liked them curved. She knew a lot of things.

Only occasionally do I get a manicure. The longer lasting gels don't seem to me to be good for your nails, plus you have to return to get the gel off, and the regular polish wears off so quickly.

When I go out to the garden with gloves on, I somehow end up with them off. The underside of my fingernails looks gross. The late Jean O'Connell, who when I knew her was the food writer at the Union-News, had a thing or two to say about dirty nails. They showed the type of person a person was. Also, their shoes.

I'll never be a hand model. I'm not happy about the way that little skin cancers and pre-cancers have messed my hands up. But my nails have not let me down.

Pedicures are welcome but not a regular indulgence. At one of our local places, they said that if you run around a lot, like I do, you should get them as part of good foot care. Maybe. Sometimes I do my own toes. I'm not bad at it. And I can even reach.  I do this more often than not, because of the money, or I keep the nail polish on so long that it is a half moon on the top of the nail.

But the whole pedicure experience is pretty relaxing. I'm half proud and half embarrassed about my partially blackened right big toenail. It definitely looks better when covered up. It got damaged during the 10-mile run I did in preparation for the Hartford half marathon. That was in October 2002, so, five months before my AML diagnosis.

Pulling the toenail off when it was loose enough, I felt like I was collecting my runner's badge of honor. (No, I didn't keep it.) A strip along the toe bed seems to be permanently damaged. As in, black. So if I'm going to wear sandals, I really need to cover that toe up. The rest look OK, but doing one would look silly.

It also is affected by the remnants of a toenail fungus. One time, a podiatrist gave me a medication for it. I had to have my liver checked. Looking back, I realized that probably wasn't a necessary drug to take.

At a recent pedicure, the woman cutting my toenails noticed from the shape that I had had ingrown toenails surgically removed. This was no fun, but it fixed the painful problem. They never grew back. She said I was lucky, because that's not always the case.

I liked the dark blue-gray color I got in Costa Rica. It stayed on for a long time.

When I was in Boston this week, Diane had the fun idea to get a pedicure together. I would have gotten the Costa Rica color, but the salon had a lighter version for spring. We both got the same color. Kind of when we used to wear the same outfits, only this time it was just our toenails dressed up.

I feel special, oh so special

My optometrist friend says I'm special.

This might sound like a compliment. But in my case I think it means that my system has been messed with so many times that I'm an oddity, that maybe all the chemotherapy skewed some test results that would be more clearcut with a "normal" person.

In particular he was referring to the visual field test that a glaucoma specialist gave me. The one where you click when you see a small oval light come on the screen. You do it one eye at a time. It is nerve-wracking, difficult to keep up. Last year when I went for the followup, she said I was fine. I was scheduled for a followup this second time in December but got so busy I had to reschedule. I forgot about it, and by the time another appointment became available, it was for next month.

When I saw my optometrist last week for an eye exam, I mentioned that I didn't have that appointment yet. He looked up the results and said there was a change. My pressure is good, but, he said, that doesn't mean I do not have glaucoma. See if you can follow that. This is when he said I was special. Meaning, it's unclear what the results mean. Chemotherapy has done such a number on my system that it could mean I have Martians living behind my eyes! (No, he didn't say that, it just came to me.) But he said to make sure to keep that appointment. And, then, mysteriously and unnervingly, he said, "You do yoga, right?" I said yes I did. "She might tell you not to do any more down dogs," he said.

For a little while after that I fretted. In the order of, first, no down dog? And second, glaucoma?

My mother had glaucoma, misdiagnosed by an ophthalmologist (and family friend) who said she had cataracts. By the time it was caught, she had lost some peripheral vision. And, especially since she was an artist, she was upset, angry and nervous. Drops kept it at bay, but she remained anxious about it. I have let it go for now, figuring that if I had badly flunked the test, they wouldn't keep me waiting for a July appointment.

In any case I am falling prey to fashion trends and getting larger glasses. I should have kept my old ones. Along with half of my old clothes. Those, however, would not fit...not because I have gained weight, but due to what graft vs. host disease has done to my skin. It is not actually my skin – it is my fascia. But the damage that occurred in that layer before I started ECP has pushed out the skin on my abdomen and, as previously stated, created ripples and bubbles that have stayed on despite the benefits of the light therapy for my overall movement and sense of well being.

Today at my appointment with the specialist in subcutaneous dermatology, I learned that I will keep on the every other week schedule for the foreseeable future. My skin has gotten softer, and they don't want to risk cutting back; when I tried every three weeks, I could feel that my skin was getting tighter. One of my compadres at the Kraft Family Blood Donor Center said it had made her muscles weaken, and I don't want that.

I showed her the divot that mysteriously appeared on my right thigh a few months ago. She prescribed an ointment to put into the middle. It will not work, however, without occlusion, meaning I will have to try to wrap my thigh in plastic wrap or some such thing.

My suspicion that I either had vampire bites or new squamous cell cancers of the skin proved wrong. I do have multiple hypertrophic actinic keratoses.  These come from sun exposure and, surprise, are another after effect of chemotherapy. The doctor did not seem concerned. She had a resident zap them, in other words, perform cryosurgery. I told my zapper that it's a good distraction when my regular dermatologist chats with me while she does freezes. So she told me about coming from her native Chicago for a Boston program that allows her to study and work at most of the area hospitals. I told her about my visit to Chicago, and before I knew it, we were done.

Neck, arms and face now have a red polka-dot effect. This should add interest to my appearance tonight when I attend the Dana-Farber volunteer appreciation dinner. It's my twelfth year with the One-to-One program, through which survivors who've been there provide support (on the phone) to those about to go through it. I figure it's the least I can do, and I enjoy doing it.