Sunday, February 28, 2016

Not enough room on patient history form

I would have a week off from Boston if not for my consultation tomorrow at the Mohs and Dermatologic Surgery Center at Faulkner Hospital. I could have tried a back-to-back with ECP next week, but I wanted to take the first available, which is tomorrow.

Oddly, the squamous cell cancer on my jawline – the one that is the subject of the consult – has, at least on the surface, disappeared. Ellen, the physician's assistant at the Kraft Blood Donor Center, said she doubts that it will require surgery. But she doesn't like a flaky raised spot on the other side of my face and suspects that it may need to biopsied. (Thought process: Another biopsy would mean no tennis for the week. Funny that I'm more worried about missing exercise than I am about needles in my face.)

In filling out the patient history form, I had quite the conversation with myself.

For example, under the category "Emotional," they want to know if you have suffered from depression or anxiety attacks. I say to myself, "Wouldn't you, if you had my history"? Do I have anxiety attacks when I think that my fatigue is due to relapse or that each new suspicious spot is a melanoma? Am I sometimes depressed about what happened?" I check "No," because I am not currently suffering from these things. I erase and check "Yes," because I sometimes do.

Then, they want you to describe body location and month/year treated, and diagnosis for every non-melanoma skin cancer.

I write on one line: lip, neck, wrist, tear duct, all squamous cell cancers, treated with Mohs by Dr. Neel at Mass General, don't know the dates.

For the category Blood/hematologic, I don't know if I should check no problem or check anemia (low red blood cell count) and low white blood cell count. Do they mean now, in which case it would be no problem, or do they mean ever, for example when my red blood cell count was so low I needed transfusions and my white count was rock bottom when I had neutropenia  after chemotherapy? I go for checking the yes boxes.

You have ONE LINE to write if you have had cancer other than skin cancer. That is a challenge. I write, Leukemia, BMTs preceded by chemo, 2003, 2007 (2), 2008. (Sounds awfully close to BLTs, but I'm confident they will figure out my shorthand.)

Good news on the transportation front: This past week, I did not get that horrible Westfield Transport. I will never get the again.

My driver from a different service said that they were shut down. Apparently I wasn't the only one complaining.

As I write about my medical history, I realize I am violating one of the rules of news writing: Avoid alphabet soup. This is the use of too many acronyms.

My health forms, and my posts, are laden with them.

ECP (Extracorporeal photopheresis)
BMT (Bone Marrow Transplant)
PDT (Photodynamic Therapy, the thing when my dermatologist burns the skin off my face, like she will do again in April)
VATS (Video Assisted Thoracic Surgery, the time when they removed the aspergillus fungus from my lung in 2003 before my first transplant.

And, my own contribution:

DALOS (Definitely A Lot of Stuff)

Sunday, February 21, 2016

The time when I broke the rules that I had set

On Wednesday and Thursday I broke a couple of my rules, creating a slump like a sagging mattress in the middle of the week.

Wanting to do a good job on my first story for, I stayed up way too late Wednesday working on it, then ate ice cream, then wrote and rewrote the story in my dreams and woke up feeling terrible. Then tried to work on it some more on Thursday but had to go back to sleep, and didn't do any of the exercise I had planned.

So: Rule number 1, disregarded: Get off the computer at a reasonable hour because working on a computer at night can disrupt sleep. When I had a "real" job at The Republican, I might have taken my work home with me in terms of thinking about it or jotting some thoughts down, but I couldn't lug the computer home with me. Having a laptop is great but the downside is that it can lure you back in at all hours.

Rule number 2, disregarded: Get some exercise every day.

I felt like I had a hangover.

Actually, I had a headache, which is ironic, because my assignment was, "What to do if your teen has a migraine."

On top of all of this, I misunderstood the assignment. I covered all the information that the editor wanted but I didn't understand that the story was supposed to follow an exact format, which you can see from this example that the editor sent me. Instead, I wrote it as I would have written it for the paper, as a personal story-driven narrative. They want to do more personal story-driven narratives, but only if the assignment specifies that format. I stayed up late doing the wrong thing.

She was nice about it, though. She asked me for my bibliography, which I sent immediately, and said she would go over it on Monday and see what we could do about getting it in the format she wanted. This will be a good gig once I have figured out how to write each story according to prescribed formats. It's hard when you have been doing a certain kind of writing for 30 years. If I look at how much I made on the story, it was probably around a penny an hour.

Also, technical problems were making me pull my hair out and do a nervous habit that I have which is picking at the thingies on my hands. I was trying to hyperlink in Word to the websites that I was using. But it would not let me copy and paste. I did what Joe told me, looking up, I can't paste a live URL into my word docs and I tried the solutions...which didn't work. I sent her the text in an email so that I could put in the links.

I thought of making a Genius Bar appointment at the Apple Store but when I wrote in what the problem was, I saw that I can schedule a call. Last time I called, the phone genius solved a problem for me so that is on my list to do before tomorrow, unless George Delisle reads this and figures it out. I miss being at the paper and yelling, "GEORGE!" or walking out back and finding him and being so relieved when he solved my computer problems. I miss those days.

Sunday, February 14, 2016

I think I forgot to say...

Ben, birthday girl, and Joe
At only seven years old, I hope I will be forgiven for skipping some things. I took a little break while considering the blogger's "age-old" question: Do I still have something to say? (Age-old is in quotes because blogging of course isn't that old.) I don't think anyone wants to read random odds and ends or too much along the lines of "I took a trip to Pittsburgh and had a great time" or "I went to the doctor and got some news."

But I gathered some thoughts and here I am now on a -11 degree morning happy to have Joe home for the weekend even though I didn't see him that much, liking the sight of his car in the driveway, and enjoying having had Chinese food with him last night while we sat in the den in our usual places
with Maddie's head on my lap, and then even braving the 1-degree night to drive down the road to the Dockside to hear the band Midlife Crisis.

I forgot to write about how sweet it is that my children get me an age-appropriate birthday candle, and how we had a nice festive party in Fairfield and how I loved holding Nell, who was wearing the cute Hannah Anderson dress that I got her for Hanukkah. And how my donor, Denise, sent me an email with seven exclamation points in the subject line.

On another topic, I told someone not too long ago that, even though I do so many activities, I miss the feeling that I got from running. That person didn't understand, but I'm sure that runners know what I mean. I was never a high-mileage runner, but I was consistent and able to get my runner's high from just three miles a few days a week and then a six- or seven-miler on the weekend. I automatically put the "just" in there, because it is a runner's thing, when talking to others who run more, to put a "just" in front of our mileage. For example, I remember sitting across from my friend Diane Lederman at the paper, and, knowing how far she usually ran, reporting that I had "just" run five or six miles.

I dreamt that I changed my stride and was running on the balls of my feet instead of landing so heavily on my toes (which I believe is the reason that one big toe hurts after running). When I was in Pittsburgh, I talked to Emily's husband, Mike, as I usually do, about various exercise-related topics. He said he also had had a toe problem and had switched to Hoka sneakers that are built up in the back so that you roll onto your toes instead of coming down hard on them. I said I worried that a switch might aggravate my plantar fasciitis, but he said it had not bothered his.

So Emily and I took a walk to a nice local shoe store, Little's, in Squirrel Hill, and I bought a pair. The next day was relatively warm, so I took an easy jog for probably a mile and a half. My stride had changed, meaning my dream had come true! The next morning I could feel my toe a little, but Mike said that was not a reliable sign because a lot of things hurt before you get going. Sure enough, later in the day I forgot about it. I took them home and will try them again when it gets warmer. If my foot guru, Ken Holt, saw them, he might have a fit. I realize a tiny run is not a great gauge, so if it doesn't work, I'm not going to push it.

Too bad I wasn't wearing them on my way home on Tuesday when my flight from Pittsburgh to Dulles left late, leaving me about 15 minutes to run through the airport from C terminal to the very end of the D terminal in my boots.

In other news, my trip to Boston the next day for ECP was pleasantly smooth. I finally got another company – Prevalent – and the polite driver arrived in my driveway ahead of time. I got a trial of Amazon Prime so I could watch Mozart in the Jungle, and the three hours with the needle in my arm passed quickly as I watched this beautiful series. The nurses seemed to enjoy the music too. When I got home that night I stayed up until 11:30 watching more episodes and went to bed with classical music in my head.

Friday, February 5, 2016

A day at the (Washington, D.C.) airport

I met a lot of interesting people yesterday:

These included:

An electricity consultant,
A biologist who works on scientific learning models for elementary schools,
A man, with his wife, who was trying to visit his 93-year-old mother,
A businessman who had just lost $4,000 in billing hours, and
A woman who was mad as hell.

We were stuck for almost seven hours in Dulles Airport in Washington, D.C., where United Airlines flight 3783 was scheduled to take us to Pittsburgh at 12:22 p.m.

I heard upon arriving at the gate at 11 a.m. that the flight was delayed due to mechanical problems on the plane coming from Norfolk. The plane had taken off but turned around. The estimated arrival time kept being pushed back by the hour. About 3:30, the flight was canceled.

We streamed over to customer relations. The next flight out, at 5:30 p.m., was full. We could get on the one after that, at 10:10 p.m., which sounded like a very bad idea, or get the shuttle to the other airport (Reagan) and get a 5:15 on American. Doris, the agent, was punching in the information that would get some of us onto that plane when our flight was reinstated after another plane came from somewhere to get us out of there.

We rushed back to the gate. Now, the plane needed a crew. A nice looking pilot stopped to talk to someone. One of my new friends said maybe he could take us. We talked about how much worse it was for the people who were stranded in airports overnight around Christmas. Still, that didn't make our own little purgatory any less annoying.

You might wonder what I was doing in that airport. I used to be able to take US Air directly from Bradley to Pittsburgh to visit my friend Emily, but after US Air merged with American and Pittsburgh lost its hub, you can't do that anymore. So I flew out of Bradley at 10:15, expecting to make the connection and get to Pittsburgh at 1:50 p.m. Washington seems out of the way, but actually, it is only a 45 minute flight.

There is a certain camaraderie in these situations – up to a point. I did a little chair yoga and some stretching, read my book and the newspaper, and talked to my new friends as we circled around the boarding area. One woman spread out her sweatshirt and fell asleep on the floor. Someone said they should give us a voucher for lunch, but this was not forthcoming.

Luckily I had decided in the morning that rather than spending $20 on bad airport food, I would make a sandwich and bring some snacks. That easy banana bread recipe that I have been making has been great; I make it with a little less sugar, throw it in the freezer, and it's ready to grab and go.

At 5:15, applause rang out when the  announcement came that the plane was ready and had a fresh crew. Meanwhile, passengers for that 5:30 plane were arriving. More chaos ensued when we tired people from the earlier flight and the relaxed newcomers for the 5:30 were told to line up together and walk out the same door to the two planes awaiting us. Someone said, Make sure you get on the right plane! They didn't make it easy.

I walked down the passageway and went to the first door, marked flight 3783. A Delta rep shooed me and the others down to the next door.

Once on the plane, we got a laugh out of that.

They even had the signs were reversed.

The pilot apologized for the "wee delay."

I am always happy to see Emily, my friend since the 7th grade, but I was especially happy yesterday.