Tuesday, September 20, 2016

The ride not taken, the biopsies done

Since you might be tired of hearing me complain about my rides, I'll try this one in reverse for a change of pace.

This morning I call MART,  which arranges the in-state rides for patients, and get quickly to the complaint line. This is already a relief because it is hard to get through on the other line when booking rides.

Call Taker: When did the problem happen, on the way there or on the way back?

Me: Neither. I had to drive myself.

I explain, I waited so long for the driver that I had to leave.

My cell phone record comes in handy. He was supposed to pick me up at 9:30 for an 11:15 appointment at Brigham Dermatology Associates in Chestnut Hill, not all the way into Boston so that was enough time.

He calls at 9:25 a.m. to say he is in Springfield in traffic and is going to be late. I say you people need to leave earlier, that's five minutes from now, but I will wait.

9:44 a.m.: I call him and leave a message, where are you, but he doesn't call back.

9:53: a.m.: I call again.

9:54.  Call again. No answer. I get in car and head out to Boston.

10:10: He calls and I can't understand him but I am already on my way.

Call Taker: How did you get home?

Me: (Pause, full of meaning, as in a Harold Pinter play)

Me: Well I drove myself there so I had to drive myself back. I was bleeding and the three places that I had biopsied hurt, which is why I set it up to not drive myself.

Call Taker: Thank you. Your complaint has been filed. Have a nice day.


Ok, so I had been bleeding not at that moment, but not too long before. I would have considered spending the night but Jane and Jim are away and I had to get home to Maddie.

On my way home from 850 Boylston Street, where the Brigham and Women's dermatology office is located, I made my usual stop at the Waban Starbucks and got a cappuccino. Around Framingham I realized it wasn't enough so I got off and went west on Route 9 and got another shot in Southborough.

Yes I really did that. It was either spend the time making the detour or spend the time pulling over to take a nap.

It had gotten late, and the reason was:

I have been known to be spacey but not this time. I had immediately written the time and date on my calendar when I made the appointment a couple of months ago. It was not a convenient week because I did not have the light therapy, but I knew I needed at least two spots looked at.

But when I got there, it was not in the books. Luckily they were able to fit me in at 2:30. Luckily I had a newspaper and a book. I leaned my head against the wall, took a little nap, read a little and ate lunch and it was time for the appointment.

I called a friendly neighbor, Joan Vohl Hamilton, who was nice enough to go in and take care of Maddie at the time I would have been home.

The practice had a new doctor or else I might have had to wait even longer, with two out on maternity leave. She said I was going to hate her but she had to biopsy three spots. I expected the two on my face (nose and forehead) so I wasn't surprised, but I thought she would just zap off the spots on the top of my right hand. But she didn't like that it is raised and painful. So she dug a little hole and off it went.

Can I still play tennis? I asked.

I thought she would say no, but she said yes.

Usually they give me a packet of new vaseline and bandaids. But the nurse wasn't getting it so I asked.

"Don't you have bandaids at home?" she asked.

Something must have been in the air yesterday.

Blood started to pour out of the spot on my nose. She sat me back down and put pressure on it.

"I just need them so I don't have to go to the store right away."

She gave me some in a bag. And one vaseline.

I was supposed to keep the bandaids on for 24 hours, but when I got home I noticed that the one on my nose had fallen off, exposing the little puncture. The place where you get a pimple before the high school party.

I felt bad for Maddie so I took her for a walk.

When I got home I called some people. The spot on my head started to bleed. After about 15 minutes I paged the doctor. He said to put a big wad of gauze on it and if it didn't stop, go to the emergency room.

I was lucky it stopped because I had already taken a half an Ativan and a half of an oxycodone. (5 mgs. each.) Before you think something about the oxy, I will repeat that I don't take it too often but that I do take it sometimes because it is better for my system than Tylenol (liver) or Advil and the rest (kidney and some other reason.)

Today was my day to volunteer at The Literacy Project but when I woke up I knew it wasn't happening.

In a week or so I will get the biopsy report and assume I will have to go back for at least one Mohs.

This morning I made a strong cup of coffee. But I am not kidding, I lost it in my house somewhere and had to make another.

On the positive side: I didn't cry.

And now I will get new skin over a spot on my hand that a previous dermatologist had over-zapped, causing it to lose pigment.

I'm sure that when people shake my hand, they don't think, that woman has no pigment in a spot on her hand, but it is one of the spots that is particularly bothersome to me.

Also I have a beautiful mug.

Monday, September 19, 2016

Playing tennis, tasting wine, standing on chairs

Tennis friends at Black Birch Vineyard
Last night I stood up on a chair to get a bud vase for a pink rose that a tennis friend gave us to mark the year anniversary of her mother's death. We all raised a rose to our mothers, on this earth or not, but always with us.

For a moment I considered whether I should do it but then realized that I could. Normally this would not be a big deal, but I thought back to my progression from hardly being able to stand up and sit down in a chair, to in no way having the strength or balance to climb up on one, to now having strong enough leg muscles to be able to do it.

I put the rose on the table next to the zinnias I picked from the garden. I can't believe how tall they got. One is almost as tall as I am. When I cut them I could hear my mother say, "Don't be afraid to cut them," meaning make sure to bring them in so you can enjoy them. At the beach, she had flowers everywhere. She was especially proud of her roses.

The rose-giving happened yesterday at Black Birch Vineyard in Southampton. It was our second year going to this beautiful place. We brought a picnic to have along with wine: either a glass or a wine tasting. I remembered the wine I liked from last year but did the wine tasting anyway. I'm not a wine connoisseur but had fun learning the proper way of tasting. I did two of the whites twice because I didn't want the reds and played a game of turning my back and guessing when I sipped. I got the Epic White right (pear tastes and other fruity nuances but not too sweet), yay, and went ahead and bought a bottle. Or two.

Flowers keeping company
Before we went, we played tennis at the Rogers Field next to Holyoke High School. It was the sister teams, Holyoke's Paper Dolls and Valley Dolls from the summer league. I'm not playing as much team tennis as I used to, but I still like playing some because otherwise I would miss the camarederie and little outings like these.

But informal tennis like we played is in many ways more fun.

For example, when an opponent lost a game on a double fault, I made up a rule: no double-faulting to lose the game.

Similarly when we play at the Canoe Club, we occasionally ask for another chance if we do something really stupid. You wouldn't do this all the time or else we would never finish. But on Wednesday the wind totally took a ball that was coming towards my backhand. Since I had been working on that shot (no bent elbow), I asked for another, moved up closer, and made the shot.

This would be a week off from going to Boston, but this morning I have a dermatology appointment. I have some new spots, and I would be pleasantly surprised if at least one or two were not squamous cells.

Thursday, September 15, 2016

Stranded... in my own house

I couldn't complain about the person driving me to Boston for my appointment yesterday because I never saw him. I waited in my usual spot looking out the window at my driveway and checked my phone to see if I had missed a call.

I called the company, Sonic Velocity (one of the good ones) but it went straight to voicemail. I called MART, which arranges these in-state rides for patients, and got put on hold while the call taker checked. She said the driver had left because he didn't see me. I said I never saw him. She said he was waiting at the foot of the driveway. I said we've been through this before. The first time this happened more than a year ago when a driver left without me I said it's a state highway and the door is on the driveway side. I said this company has been taking me for more than a year and they know that. She said it is a curb-to-curb pickup and they don't have to call me. It is only a courtesy and if I want it I have to request it. I said I did request it. She said there was nothing she could do but put me on standby, in which case I would need to wait an hour.

What would you like me to do, she asked. I started crying. If you can label a type of cry, I guess it was a combination anger and frustration. I hung up on her. I missed my appointment. Still crying, I called the Kraft Family Blood Donor Center. Diane, who books the ECP -- or photopheresis -- appointments, was very nice. I rebooked for today. I am going to drive myself.

So, OK, it's not life or death. I can do it today. I had arranged things so I could do it yesterday as planned and then had to rearrange them. But what if someone REALLY needed to go to an appointment the same day? They would be screwed.

I'm stoic (for the most part ) about the big things, but the annoyances like this get me all worked up.

People have asked why I don't just drive myself. Because it's a lot to do in one day, and you lose a little blood in the process, and I get tired. Depending on how I feel afterwards, I'm going to either sleep at Margaret's or come home. I have things to do tonight and tomorrow so I would rather come home.

I put a half humorous post on Facebook saying what had happened and asking if anyone wants to drive me to Boston and hang around for three hours while I get my blood sunburned.

My childhood friend from Atlantic Beach, Mike Kass, was the only one who responded. A new social worker said she didn't understand why I was hesitant to ask people for rides. I said because people are busy and it takes up a whole day and they have other things to to. I think it is probably like this for anyone who has been seriously ill: You are lucky to have friends to help you in the serious stage, and you have to understand that they are less likely to do it in the maintenance stage.

I think Mike would have driven me. But it's a long way from California.

Sunday, September 11, 2016

On 9/11, 'We are OK; our city is not'

We had Passover once at Windows on the World, the spectacular restaurant on the 107th floor of the World Trade Center, with views of Manhattan, Brooklyn and New Jersey. It was a big treat.

Sometimes we went out on Jewish holidays to give my mother a break from doing it. Our apartment was small. Sometimes we extended the dining room table with a bridge table or made a children's table in our bedroom. It could turn into a large group including our extended family. I remember getting dressed up to go to Windows on the World, and then the long ride up in the elevator.

Ben was in kindergarten, Joe still a tiny little thing.

Ben had been fascinated (OK, obsessed) with presidents. On his bookshelf, books about sports and books about presidents. We read presidents' biographies. He had a presidents placemat, which I have kept all these years.

When we passed Greenwich, Connecticut, on the way down to New York, he was so excited: President George Bush was from there. He even wanted to detour and drive around. I actually can't remember if we did. It would have been difficult because the parkways would have been jammed with people going to "the old country."

Ben could recite the presidents in order. My mother had him do it for the occasion. I can see him in his little bowl cut with bangs. If it was these days I might have made a Youtube video and turned him into a star. He was a star anyway.

My parents were at doctors' appointments on 9/11. They were walking up Fifth Avenue when a Good Samaritan got them a cab. My father had gotten unsteady at this time a little more than a year before his death. It was a minor miracle.

When I went to The Republican to do my part in the stories that we were all feeding to one reporter, I (also miraculously) got through to my cousin Bruce in New York. He told me that my parents had gotten home to the apartment on upper Fifth Avenue, from which you could see the smoke downtown.

"We are OK," Bruce said. "Our city is not."

My father sat on my living room couch months later in the spot near the window where he liked to read The New York Times in the morning sun.

"The bastards," he said.

What they had done to our city. It was, and is, a living thing to us. I haven't lived there for a long time, but it is still my city. I wasn't there, but yet I was.

Compared to all the tragedy, this was, and is, incredibly minor. But I was so sad that he saw the destruction and he never saw our city repaired. At least my mother had that.

On 9/11, 79 employees of that spectacular restaurant in the sky lost their lives. They were among 2,753 who died in New York, out of a total of 2,996 in the country.

Saturday, September 10, 2016

Lingering side effect from chemo a real pain

The acupuncturist said yesterday that it's good that the needles she put in the soles of my feet made me jump, because people with really bad neuropathy don't feel anything.

I'm not sure if that was encouraging or not because I'm upset that instead of getting better, the neuropathy in my feet has gotten worse.

She said it could be the heat, so I'm hoping that's all it is. Out of all the things that they can do for chemotherapy side effects, curing neuropathy is one of the most elusive. A doctor in the hospital told me to try cocoa butter. I don't think that helped. The drugs that sort of work are intended for other problems, such as the gabapentin (Neurontin), which is an anti-seizure medication originally intended to help manage epilepsy but which is also used for nerve pain and other problems.

Dana-Farber graphic
It is called CIPN, chemotherapy-induced peripheral neuropathy. Nerve damage to my feet. I don't think that in the past almost eight years they have ever felt totally normal. At best I have a little tingling. Sometimes people say I'm walking gingerly, and that must be the reason. I can think of at least one person who asked, "Why are you walking so funny?" and it was actually a doctor in my family who knows what I have been through. This I don't appreciate. I got nervous when I looked it up and saw that it can get so bad as to interfere with activity.

Interestingly, like a person who loses his or her (just can't say their, sorry, even though it's supposedly OK) stutter when singing, I don't have it that much when I run around.

I originally took three Neurontin a day but cut back to two when it seemed to get somewhat better. I have an email in to Melissa to see if she wants me to go back to three or try something else. One time I tried to go off in an effort to cut back on meds, and once it got out of my system I started waking up at night with sharp knife-like pain in the bottom of my feet. I went back on the drug. Another time when I ran out for a few days, I was late on picking up the refill because I thought that since my feet were OK it didn't matter that much.

I started to feel AWFUL. My stomach hurt, my head ached and I felt depressed. It occurred to me to look up gabapentin withdrawal symptoms and those and more were there, including even suicidal thought. I realized what a strong drug it is.

The list of integrative therapies is super long and kind of confusing.

I'm going to wait to hear back or maybe get some cocoa butter and try it again.

Wednesday, September 7, 2016

When you fall in love with your editor

Back in the day
When I tell people I fell in love with my husband-to-be’s editing back at my first newspaper job at the old Transcript-Telegram, they think it’s a joke. Well it’s a kinda sorta joke.

I tell them I loved what he did with my words. I say it in a funny voice so they know it’s a joke. But partially true. Because in any area where you wish to excel, there can be some falling in love with the person you emulate. By that measure you can fall in love with a lot of people who are experts at the things you want to do better. Tennis coaches, yoga teachers, etc. Of course you’re not going to MARRY them all or want to marry them, though I did it in this particular case, resulting in three fabulous children.

There is nothing better for a writer than to have an editor who knows how to ask the right questions, how to make you delve a little deeper and find that extra nuance while at the same time making sure you resist the temptation to over explain and indulge in long-windedness. Like I really just did in that sentence, using over explain and long winded, which mean the same thing, but since this is a blog post I’m going to indulge.

I bring this up because I had the best experience working with Rebecca Hudson, the espnW editor for my essay about how tennis helped me recover from leukemia. When I wrote that I loved tennis, she asked me to delve deeper into why I love tennis. I really had to think about it.

It’s not always easy to explain why you like or dislike something.

When I reviewed plays, I sometimes wished I could say, “I liked it,” or, “It was boring,” or “It was a lot of fun.” Of course that would leave a lot of blank space. I had to explain why I thought this or that. A good way to go about it was to look at all the details — the setting, the costumes, the performers’ mannerisms ­, inflections ­— and describe them. In doing so I would give a picture of the play so that readers could see it for themselves and wouldn’t have to judge based on my opinion. And in describing the play, I would feel my own opinion begin to emerge.

So what about tennis do I love? The memories of my father at Atlantic Beach, but also the feeling that you get when you hit the sweet spot. I had gotten the memory part but had to dig deeper for the feeling the ball on the racquet part. Golfers probably feel the same way, or anyone else getting the passing perfect moment in a sport.

Becky also was great because as we went back and forth on it many times, she accepted my changes and suggested hers with good humor. I had to cover a lot of ground, starting with my AML diagnosis in 2003 up until today through the lens of tennis. At first it was way too long, so she suggested cutting out the early part by linking to my New York Times essay. I lived the writing of the Espn story for a couple of months in between doing other things. Occasionally I woke up in the middle of the night or early in the morning with something I needed to add or change, and she was always right there with me.

People have written about the interesting difference in tone when you text with varying punctuation, and the same applies for emails. For example, OK! means great; while OK (no punctuation) sounds either neutral or wishy-washy and OK. (period) Sounds angry.

My kids used to tell me when I started texting that I sounded angry all the time because I never used an exclamation point!

Even though most of us don’t use exclamation points in our formal writing, using them in texts and emails can be a good thing. I bring this up because Becky used them a lot when I sent her new versions, responding with OK! Or Got it! So I didn’t feel like she was angry or annoyed with a gazillion edits!

Thursday, September 1, 2016

Mixed reaction to winning an award

So I got an award for one of the 10 best leukemia blogs of 2016 from Healthline.com.

The letter said: Congratulations! Your blog has made Healthline's list of the Best Leukemia Blogs of 2016! Healthline's editors selected each winner based on their reach to educate, inspire, and empower their readers with frequent updates and high quality information. We created a badge to help you publicize your achievement, and I encourage you to embed the badge on your site and share your 2016 status with your followers. 

Winners list: http://www.healthline.com/health/leukemia/best-blogs
Thanks for providing a great resource to the Leukemia community.

I followed the link and saw this:

Over 60,000 people will be diagnosed with leukemia in 2016. While survival rates for this type of cancer are higher than ever before, it’s still a very serious and potentially deadly diagnosis. These outstanding blogs are a way for people who have the disease to share their experiences, be a part of a community, and educate others including loved ones about the short- and long-term effects of leukemia. The camaraderie, compassion and resolve these bloggers display is truly remarkable. 

I was happy to receive it of course but also it made me really miss my blog friends, one of whom, PJ, turned into a friend off the screen as well. I looked through the list to see if there was anyone like me, (with multiple transplants) and there wasn't. Someone once suggested looking through leukemia blogs to find other friends but I didn't have it in me. I think of PJ and Ann a lot when I have some odd side effect to share and they were the only ones who really understood. Their husbands have left the blogs up there. They are The Plog and Ann's Love. They died two years ago, five months apart, almost to the day.