Wednesday, March 23, 2016

A little more pain today

All last night I was wondering why my face didn't hurt. The nurse said most people do very well and only need a little Tylenol. The nurse's aide gave me one for the headache I was getting while waiting to get stitched up and that probably helped in not having any pain. I was happy enough icing it and eating the good meal that Diane had prepared and then watching election returns until about 11.

I suspected it might be different when the numbing medicine totally wore off and sure enough, this morning it hurt a lot. It makes sense when someone has been digging around in your skin even though she didn't have to dig that far.

It reminds me of my last Cesarean with Katie when they had put morphine in with my IV. For a long time afterwards I thought wow, this is great, it's not going to hurt like the others. I was pretty comfortable until I started to itch like crazy all over. Then a nurse told me it was a reaction to the morphine. I got something for the itch and sure enough after the morphine wore off I needed something for the pain.

This morning I was going to drive to the Kraft Blood Donor Center for ECP but I took an oxycodone and called an Uber.

I'm not going to take another though. I brought some Tylenol but Ellen the PA said ibuprofin will work better so I'll get some when I leave. I'm also trying to balance an ice pack on my shoulder to get some cold on my face but it isn't working too well.

 The woman in the bed next to me knows someone from my high school. I told her some of the things I did in high school in New York such as telling my parents I was sleeping at a friends when I was really at my boyfriend's. Tina, my nurse, said she never knew.

Last time I was here, my arm didn't hurt at all. With about an hour left it has gotten painful so I'm going to have to flag someone down. You never know from week to week.

Tuesday, March 22, 2016

Mohs today, ECP and museum tomorrow

Today, needles in my face.
Tomorrow, in my arm.

Par for the course.

An odd cliche for me to use since I don't play golf but it fits.

I drove to Diane's and she was kind enough to drive me to Brigham and Woman's Faulkner Hospital for a Mohs surgery on a tiny squamous cell that had spread a little under the skin on my right jaw. The biopsy seemed like it took care of it, which sometimes happens, but Dr. Lin wanted me to get the Mohs. I figured it would just take one pass, and it did. In others that I had done, it went as high as three, but most often two. The surgeon takes out the cancer and a little bit of the margins, sends the specimen to a lab to see if it is all gone while you wait about 45 minutes, and does some more if needed.

I got a little dizzy while I was waiting. The nurse's aide lowered the top of the bed so the blood would go to my head. I took the opportunity to raise my legs up in the air so it was as if I was doing legs up the wall in yoga. After that I dozed off. On the way back to the house I got a cappuccino at you know where.

Tomorrow I have ECP. I had it moved to 11 a.m. instead of 3 because at 5:30 I am attending a dinner for One-to-One volunteers. These are bone marrow transplant recipients like me who talk to  patients undergoing treatment. I have only talked to a couple of people since my situation does not match up too well with others. But I did have a good conversation with one patient recently, sharing some ideas about how I got through it. He was kind of down and said he felt better afterwards.

I don't know anyone anymore who has had a transplant. It should be good to meet some others. I don't know if there will be any "multiples." A thought that brings me back to how much I miss my friends Patricia and Anne.

I'm going to have some time in between so I think I'll walk down to the Museum of Fine Arts or get there some other way if the weather isn't good.

Oh and I forgot to say I don't think I can play tennis for two weeks. What will I do?

Sunday, March 20, 2016

Saint Patrick's race day memories

Happy runner, 1980
The Saint Patrick's Road Race, held yesterday, brings back intense memories.

One of my parents took the photo at right as I finished the race in 1980. I don't look much worse for the wear after running the course when it was longer, about eight miles, going up and down the hills at Holyoke Community College. A bunch of us at the Transcript-Telegram would run up and down those hills after work. I didn't have many cares except for starting my career in journalism and catching the eye of the editor who I would later marry.

My time was pretty good, I think about 54 minutes when the course was reduced to a 10K. By that time I was at the Sunday Republican, talking to my runner friends the next day about how I could have run faster if I tried. They said that if I ran speed intervals I really could do it. One of them said jokingly (I think) that I was a wuss. Or something friendly like that. I did occasionally pick it up between trees or other markers on the road and sometimes on the treadmill got to eight minute miles, but that was about it for me.  Now if you ran or even walked with me you probably could not believe I was ever that fast.

 Here is the link to the essay that I wrote for the New York Times magazine's Lives page after my fatigue and slower time during the 2003 race led to my leukemia diagnosis. The other photo is of me at the Quabbin Reservoir when I got out on a break from chemotherapy and just wanted to be near the water. My mother took the photo. I must have been cold because I had two sweatshirts on. I look at both of those photos and can't believe either of them was me. After the little outing at home, it was back to the hospital and on to the rest of the story.

Showing off my bald head, 2003
As people who know me know, I have run the race many times since. I have the energy to run it again. I know because I played two hours of tennis Friday night and could have played more except for my toe starting to hurt and the sight of the pizza calling to me.

Just as I was incredibly frustrated by plantar fasciitis, now I am frustrated by one big toe that hurts after I run. People who know me also know that I never complained about leukemia but complained, and continue to complain, about my feet. I think I could ease back into it in my new Hokas, but as of yesterday I was not ready to try it.

I was sorry when I went down to watch Ben that I wasn't doing it. I have mixed feelings about being there. But I wanted to see Ben and be in the mix of it. Well, I parked my car so far away that I walked about a mile to get to the start. When I walked to the finish I was on the wrong side and had to walk all the way around to get to the side where I could see the finishers. I stood there with my camera ready, stood there for about half an hour, and then realized I had missed him. With thousands of people milling around, I decided I would never find him or Joe.

So I walked down to Canal Street. And realized that a nightmare of mine had come true. In my nightmare, I'm walking, usually around New York, and am unable to find my car. There I was in Holyoke and I couldn't remember where I parked my car. I thought I might have to flag down a police cruiser to drive me around. I didn't write it down because I thought I would remember it.

Then I played a memory game. I remembered it was the last name of a woman with whom I had recently connected on Facebook. And then it came to me. Wendy Bower. It was Bower Street.

I was sad that I couldn't run the race, but happy that I found the car.

I treated myself to a Coke to wash down the hotdog that I had bought, drove home, and thought about something else. I was glad to talk to Ben later and find out that he had a good run.

Sunday, March 6, 2016

Another skin cancer, another crazy driver

My squamous cell radar regarding my skin, like my parking radar in New York, continues to be accurate.

Before I went to Faulkner Hospital on Monday for the Mohs consult about the spot on my right jawbone, Ellen, the physician's assistant at the Kraft Family Blood Donor Center, said she didn't like a raised flaky spot on my cheek. I had noticed a spot at the top of my nose, right where you might put your pointer finger if you were deep in thought, and felt that the flakiness there might signal a problem.

These are not the kind of signs usually associated with skin cancer. But upon looking into it, I saw that the Mayo clinic described the signs of a squamous cell cancer this way: "a flat lesion with a scaly, crusted surface." The signs of basal cell cancer and melanoma are different.

So when I had my appointment I pointed out the two new spots. The dermatologist wasn't worried about Ellen's spot, which will be taken care of by my upcoming face fry, or photodynamic therapy, but she did biopsy "my" spot. When I got the biopsy report during the week, I learned it was what I suspected. Luckily these have all been in situ – on the skin. I got a message saying that I could either apply the chemotherapy cream I already have or wait to get it frozen when I return for the Mohs. I am applying the cream.

Do you remember Kenny?

The driver who stopped late at night so the other passenger could get her diabetes medicine? Do you remember the kerfuffle that ensued? Well, wouldn't you know it, another problem occurred on my way home, exacerbated by the pain in the biopsied spot as the numbing medicine wore off. When his dispatcher called to tell him to pick up a patient in Worcester and bring her home to Springfield, I heard him say that his passenger (me) wouldn't like it and he was going to have to listen to me yelling all the way home.

I said I wasn't going to yell but since the last time we had driven all the way to East Springfield AND stopped for the medicine would he get off at Exit 7 and take me home first because I was in pain. He said why would he do that because he lives in Chicopee and it was more convenient for him to go to Springfield first and then to South Hadley.

Oh and did I mention that previously he had been talking on his (hand held) phone and telling a friend that he was annoyed that he had to lock his gun in his glove compartment?

He said he was the driver and the order of dropping off was up to him and I had to EARN the right to say when I wanted to get dropped off and so on and so forth in a continuing rant.

You are probably thinking don't get into it with these drivers, but he was taunting me and I got hysterical like the last time I was in the car with him. We took our detour through Worcester. The woman who he picked up at a hospital got in the front seat. When she heard me sniffling, she asked, "You all right, honey"?

Apparently she had had her own problems with MART after waiting for hours and hours to get picked up. When I told her that I really needed to get home, she said she had been waiting so long that she didn't care if she waited a little longer so he should go ahead and drop me off first.

Kenny turned around and said, "See"?

See what?

I got over myself after she started telling me about her own problems. Her hospital visit didn't sound serious – aspiration of what sounded like a non-cancerous cyst – but her health history was.

 She said she was a recovered crack cocaine addict and alcoholic. She said Worcester was a drug haven and she had to get out of there but she still went back for medical care.

It dawned on me that she was the same woman who had demanded we stop for her medicine. I hadn't seen her that well in the dark, but the pieces began to add up. She must have been having a really bad night because on Monday she was a different person.

She said she had neuropathy in her feet (due to diabetes). I said I had it from chemo. We found that we both take gabapentin and that nothing totally makes the pins and needles go away. Hers sounds worse. We showed each other photos of our children. Then, it being the day before Super Tuesday, she brought up the election.

"I'm going to vote for my Hillary," she said. All of her people in Georgia were going to also.

She said that while George Bush was flying over New Orleans after Hurricane Katrina, Bill and Hillary were there taking care of the babies. She doesn't like Hillary as much as she liked Bill, but, she said, "He has her back."

You can find solidarity in the most unlikely places.

People ask why I continue to take these rides. The answer is that some of drivers are fine, and the cost/benefit ratio still weighs in favor of the benefit of not having to do the driving myself.

I am going to call the company and say I will not get in a car again with Kenny.

And I'm going to drive myself the next two times anyway since I have a double-header on both ECP weeks.

This week I'm staying at Margaret's on Wednesday because I have my regular check-up with Dr. Alyea on Thursday. Next week I'll stay at Diane's Tuesday night because I have the Mohs that day and ECP the next day.

I'm lucky to have my sister and my sister/friend so close to Dana-Farber!

Wednesday, March 2, 2016

When a picture is worth a thousand words

Nell Catherine
        I realized I'm the same age as the grandchild
        I thought I would never see!
Ben,  Joe, and moi