Wednesday, May 24, 2017

Sliced finger gets in way of slicing on court

Today is a tennis day, but I couldn't go because I was being nice to the dog.

Specifically, when cleaning out the fridge for trash day, I decided to slice some chicken off the bone for Maddie.

The knife was in good shape because I had sharpened it for Passover. So it made a nice cut when I missed and sliced right into my index finger on my left hand. I bandaged it and wrapped tape around it but it continued to bleed. I thought briefly of walking down to the fire station – there is just one house between us – but thought better of it and called Fire District 2. I stressed that it wasn't an emergency.

The assistant fire chief, Todd Calkins, arrived in a jiff with an EMT. They went into their "boo-boo kit" (their word) and bandaged it and wrapped it tightly. They said it looked like it might need stitches. They also said I should look into whether my tetanus shot was up-to-date.

Todd recalled the day when I called the fire department in a panic when I came home from work and saw smoke pouring out of the nearly-completed addition. I was pregnant with Katie. I had just picked up Ben and Joe when I saw it. I ran in and got my dog-three-times-removed, our big black Lab, Winnie. I later learned that a carpenter had flicked an ash into a barrel. Apparently in a few minutes, the old house would have burst into flames.

Todd said he had two other houses in a similar state that same night.

They said they would take me to the ER. I said I would figure it out.

The bleeding stopped. It only hurt a little. Thus, I dilly-dallied.

I am still trying to get organized after the informative and productive but overwhelming writers' conference I went to earlier this month (May 5-6), presented by the American Society of Journalists and Authors. It was my first time as a member. I had gone last year as a non-member and found it so beneficial that I decided to apply for membership, got in, and got psyched for the full benefit of two days as opposed to the general public's one day.

Loaded down w/ bags at #ASJA2017NY
I realized that I didn't write a blog post about it. All I did was put a photo on FB. I was too busy BEING THERE NOW. Short version is that it offered the camaraderie that I miss from my newspaper days. I learned a lot from the many sessions, made connections with editors and got cards from editors with whom I didn't have a chance to speak, got story ideas, felt supported, enjoyed the conference-supplied Starbucks coffee, and even had a chance to sneak in a visit with Aunt Marge and (cousin) Jeanne.

Even before I left the conference, I took some time to send follow-up emails to editors. I did more of that when I came home and thought about stories I would like to write or pitch. I guess germinating is all part of working.

But I've been feeling a little like some of us tennis players feel after the Districts, the USTA tournament up a level from the local leagues.

You expend so much anticipatory energy – and so much energy there – that for a while afterwards you need a little break from tennis. Thought bubble: "Don't let me ever look at a tennis ball again! Well, maybe not never ever."

Back to that slightly sliced finger. Somewhere around 3 today, I called my internist’s office to see about the tetanus shot. Turns out I had one two years ago. They don’t do stitches, so the nurse suggested Urgent Care. When I got to the one on Memorial Drive in Chicopee, only a couple of people were before me, while earlier in the day it was busier. So by lingering at home, I had saved myself waiting room time.

A physician’s assistant took off the bandaid. It didn’t look bad enough to need stitches. Instead, she used skin glue. The application process made it hurt more than when I got there.

Since it’s the left hand, hopefully it will be better in the morning and I can play a little tennis. I have a lesson that I don’t want to miss.

Wednesday, May 17, 2017

Outdoor tennis and new plan (re the drivers)

First day of tennis at the Canoe Club.

While most dress down to go outside, I am dressing UP. Not with fancy clothes but with sun protection shirt, legging to my ankles, and, if I can find them, my sun protection gloves.

When I get to Dana-Farber for ECP, aka the light treatment aka the internal sunburn, today, the first thing that Ellen, the PA, will ask, is, "Did you play tennis today?" Maybe I won't see her, though, because since I now go an our later, at 4, she has often already left.

The long-sleeved shirt that I got from Coolibar is supposed to breathe, but it doesn't, so if anyone knows a good sun protection company or a specific shirt that is not so uncomfortable, please let me know.

As I wrote in my recent Healthline story describing my life with chronic symptoms, going back and forth to Boston is forever going to be a part of my life.

On my last visit two weeks ago, I enjoyed the luxury of having a friend take me.

It is not going to happen every time. I was grateful when, in the acute phase, people drove me. And I understand why it's not happening now when it's no longer a matter of life or death. It sucks up just about a whole day. If I could cope with all the medical drama, you would have thought I would have learned to cope with the driving drama. There's still time.

Today I have a double header, and two weeks from now, the same thing.

That will mean a lot of drivers. One today to Dana-Farber through MART (the source of most of the crazy drivers) , another, through The Ride, to Diane and David's, then The Ride again to my dermatology appointment tomorrow, then a different driver back home tomorrow.

The next time I go, the second part of the double header will be a checkup with Dr. Alyea.

I am not going to engage.

I have already packed my headphones and will just put them on and listen to something on my phone if any of them act up.

Stay tuned.

Tuesday, May 16, 2017

Thoughts of both parents around Mother's Day

With two other volunteers in Whately 
I usually walk Maddie into the woods at the end of my driveway to briefly do her business. The other day when she stopped and wouldn't go, I realized it was because I had forgotten to put her collar on.

"Oh, we forgot your collar, let's go back in," I said, and she turned around and obliged.

I usually take it off to "undress" her for the night.

It reminded me of the time my father was walking our dog Sam across the street from our apartment at night and a threatening man emerged from the park. My father jerked on the leash to get Sam to come. His collar slipped off and he froze. So Dad scooped him up and got back to the apartment safely.

Sam was a poodle mix before it was trendy. An affenpinscher-poodle, or affen-poo, or something like that. My mother's friend needed to find a home for him and my parents agreed to take him.

One summer at the beach they said my father was coming back with a Big Surprise.

We thought it might be a boat.

But my father brought home a black dog so small that he could fit in the palm of my father's large hand. Sam ran and hid under the car in our driveway at 77 Coronado St., Atlantic Beach. He of course came out and became a legendary part of the family.

As Mother's Day approached last week, if a person who thinks about their mother all the time could do it even more, I did just that. I took out my mother's handmade cookbook and made Aunt Anna's Company Chicken. I served it to a friend with parsley for garnish and candlelight or mood. (Marinate boneless breasts in dehydrated onion soup mix, whole cranberries and the dark kind of French dressing and cook at 325 for about an hour and a quarter. Before done put pitted black Bing cherries on top.)

For Mother's Day brunch, I put out the flower-rimmed placemats that she used for brunch in the apartment. Everything was beautiful; an artist on paper and in life. Doilies under plates, flowers on the table.

I didn't have enough little bowls of one kind for fruit, so I used a couple of different types and thought of her saying that everything doesn't need to match. Eclectic is more interesting. No milk containers or anything in packages should go on the table. We made an exception for the bottle of syrup.

I was kind of beat. I had gotten up at 4:45 a.m. to drive to Whately for the start of my 6 a.m. volunteer shift (handing out T-shirts) for the Cancer Connection's Mother's Day Half Marathon.

It was cold and rainy. For my last volunteer stint (Bridge of Flowers 10-K) we handed out T-shirts inside a school. I hadn't thought to ask what this would be like. It turns out we were under a tent, only partially protected. I didn't have on enough clothing to be comfortable handing out T-shirts. Luckily I had some gloves in the car but was still cold on this raw day. It took me half a day at least to get warm.

The volunteer coordinator said some volunteers had dropped out (many of them recently treated cancer survivors and patients). Understandably, they didn't want to get sick. I told her that I didn't have an excuse because it's been eight years.

Three of us handing out T-shirts sang and jumped up and down to keep warm. I was never so happy to see a Dunkin Donuts as when I headed out at around 8:30 to get a hot chocolate. All in all I was glad I did it.

With my 45th high school reunion fast approaching, I dreamt that I told someone that I wished it was my 15th and not my 45th. The person said it didn't really matter what year it was because we're all in the same boat by only being sure of this one day.

Friday, May 5, 2017

Easy peasy (kind of sort of)

Still life, real life
A friend drove me to Dana-Farber Wednesday, so I have no complaints about the driver.

First stop was 11th floor, head and neck oncology, to see Dr. Goguen, "the tongue doctor" who scooped out a piece of my tongue that had dysplasic, or pre-malignant, cells on it. That was in 2011, on Katie's birthday. I have gotten checkups once a year for a while, and the doctor said it looks fine and can now be checked just by my dentist or my regular doctors.

A physician's assistant who was with her asked if my skin had been darkened by chemotherapy or the sun. I said I thought it had changed a shade after chemo. Either way, she said I looked healthy.

On to ECP, I didn't start right away because my hematocrit had been low last time (from bleeding on the head, caused by Mohs surgery on a squamous cell), and they needed to check it. I had forgotten to get in writing the test results from a finger prick that I got at Dr. Berger's office when I had my stitches removed. I called the office but my doctor's nurse was on vacation and didn't leave a forwarding number. I called another nurse and left a message. She got back to me and said they measure hemoglobin, not hematocrit, and it was 11.

The nurse who did the test originally, as well as the second nurse, couldn't tell me the hematocrit. I thought that was odd because all you have to do is look up the ratio of hemoglobin to hematocrit.

Hemoglobin and hematocrit are parts of the red blood cell.

Hemoglobin is the protein contained in red blood cells that is responsible for delivery of oxygen to the tissues. The hematocrit measures the volume of red blood cells compared to the total blood volume (red blood cells and plasma). 

In general, to get the hematocrit, multiply hemoglobin by three.

At ECP they want the "crit" to be 27. Last time it hovered a little under, but they did the light treatment anyway.

Although I had gotten the hemoglobin from my doctor, the nurse at the Kraft Blood Donor Center had already sent my sample (after two tries because the needle hit scar tissue). It was 33. (Eleven times three!)

So I got the info from two sources that I was good to go.

My friend was standing at the end of the bed while this was going on and continued to stand there while I got hooked up to the machine that my blood would flow into for my the "internal sunburn."

I said he might want to sit down. I felt better after he did.

I just can't ask someone to drive me every other week, but it sure was nice to have a break.

Monday, May 1, 2017

Two years with the light therapy already

First day at ECP, two years ago
The light therapy, the internal sunburn, the blood thing: These are some of the ways I have described the treatment I have been getting at Dana-Farber for the past two years.

It is technically called extracorporeal photopheresis, or ECP, for Graft vs. Host Disease of the skin. When last week Facebook sent a memory from April 28, 2015, I thought it was a good time to look at the then and the now.

It began with a nurse telling me, "We have to get them to stop acting like teenagers."

The post continued,

The "them" is my T cells, and my nurse today at the Kraft Blood Donor Center at Dana-Farber told me this in explaining why it will be my home away from home for two days out of each week for the next three months or longer.

My first visits yesterday and today went well. The only discomfort occurred when the needle didn't quite hit the spot (not fun) and when my arm hurt for the last 10 minutes or so when my white cells were returned to me after being collected during the three-hour process called ECP, or extracorporeal photopheresis.

My blood went through six cycles during which white blood cells (which contain T cells) were collected and then the rest of my blood returned to me. At the end, a bag of white cells is subjected to UV radiation, which changes their DNA so they will stop attacking my skin.

"They're getting a spanking," the nurse said.

The process works for all kinds of Graft vs. Host Disease, and hopefully it will also help my liver and enable me to get off prednisone. Two other people were getting it done at the same time, and several more were scheduled for the next round at 11, and more for 3, which is when I did it yesterday, followed by the 7 a.m. session today. It felt early but it was actually a good time because I slept through most of it.

Clearly I'm not the only one who drives a distance. One couple, for example, comes from New Jersey.

And I'm not alone in getting GVHD of the skin years after my transplant. The nurse said one woman developed it after 12 years.

I had brought my computer and was able to read a little of the New York Times. I have a book but I'm not sure how that will go because I can only use one hand. I'll try it next time leaning the book on a pillow. The nurse said most people use a tablet. I'm still a hold-out on that, though.

Afterwards, I made a beeline to the cafeteria, where they have Starbucks coffee. It's not a great idea to drink too much beforehand, because if you go to the bathroom they have to put a board on your arm to keep it straight.

I texted the photo of me in the bed to Ben, Joe and Katie.

Joe wrote, "Looks comfortable!" and Katie wrote,

"Back at hotel Boston!"

NOTE: Alas, it did not help me get off prednisone. I doubt that it will ever happen. It did soften the skin that was hardening and improve my flexibility to the point that I've gotten one of the best rewards: A compliment from our pro, George, who frequently asks what they're putting in my veins to enable me to get to more balls.

Still, at this point my progress can feel frustratingly slow. I'm keeping at it at least for a while in the hopes that the ripples on my thighs and abdomen (and the feeling that it has a band around it) will diminish somewhat before I stretch out the treatments into more maintenance therapy.

While Nora Ephron felt bad about her neck I have to admit I feel bad about my stomach.

After all I've been through, I should probably get over it.

Wednesday, April 26, 2017

Why I wore tennis clothes from 8 a.m. to 8 p.m.

Lunch and dessert
It was good to get back to tennis.

I had a great time at the round robin in Enfield. The courts were free afterwards and so four of us stayed an extra half an hour. Total time was from a little after 9 until 11. I was pretty tired but felt great.

After that I went to Northampton to help a friend with a project. I usually go to Starbucks afterwards but I didn't want to be late so I went straight up Route 91. I got off at Route 5, and, not knowing if my friend and his wife had coffee, pulled up in front of Northampton Coffee.

With construction ongoing, a traffic cop was waving cars through from one side and then the other. I asked how I could get across, and she said to go stand beside her. I asked if she wanted a coffee, and when she said no, I said how about a muffin? She didn't want either, but she seemed pleased.

Inside, I found that the muffins were gone. The only possibility was an expensive almond croissant. I was hungry so I bought it, saying to the barista that I figured it was healthy because it had almonds on it.

"Food for the soul," she said.

We worked on the project until a little after three. Then they took me to the Pie Bar. The quiche with feta, spinach and peppers looked good, and so did the blueberry pie. I got pie for the meal (quiche) and split a (piece of) pie for dessert.

After that I went down to the Holyoke Y for yoga. With all that pie in my stomach, I thought I might feel sick, but I was OK.

Having skipped everything up through Monday, when I got my stitches out, I felt like it was worth it to fit in two things in one day. Good for the mental health.

By the time I picked up Maddie at Jim and Jane's and got home, it was just about 8 p.m.

But I felt better for the exercise, the company of friends, and the pie (s).


Monday, April 24, 2017

Ten good things

With Nell and Uncle Joe
1. Stitches out of head and calf today.

2.  Exercise can begin again.

3. BP normal at doctor visit today (was high at Dana-Farber last week).

4. Hematocrit normal (was low due to bleeding from head during surgery).

5. Good visit in Fairfield with Ben, Joe, Jim and Nell on Saturday.

6. Women's Running ran my piece on finishing last in a race.

Ben and Nell
7. Dana-Farber ran my piece on a support group for blood cancer survivors.

8. A friend is going to drive me to Dana-Farber next week.


9. Attended fun and interesting event following Mt. Toby Friends Meeting Sunday in which jazz trio played and performers discussed similarities between improvisational jazz and Quaker meeting.

10. At car wash today, guys vacuuming inside car found missing rolls of Tums.