Monday, June 30, 2014

On losing a friend to leukemia

Patricia and her "therapy dog," Buck.
Shortly after I started my blog five years ago, PJ appeared out of the Ethernet to say that we were doppelgangers.

We were both runners, we both had three children of roughly the same age, and we both were treated at Dana-Farber for the same cancer – acute myeloid leukemia, or AML.

Over the years we competed about who had had the worst and most: the most bone marrow transplants (I won with 4-2), most falls (we lost count), skin cancers (don’t know) worst rashes (hers) and most teeth lost (me, 11-4). Then there was the too-many-to-count column: pills swallowed, tests taken, specialists seen. We made light of these ordeals, using humor as an antidote to the pain, the anxiety, the fear.

She was feisty, funny, smart and compassionate. So I was just so sad when I read her husband Marty’s email on Sunday saying that she had died the day before. After eight years of doing battle, she had relapsed a second time, and there was nothing else to do. She died peacefully in a hospice in Brooklyn.

PJ – aka Patricia Jempty– was funny even in the way she named her blog: The Plog.
She was so proud of her children, posting photos of the family at milestone events and Thanksgiving dinners. She got to many of those, but not enough.

We each visited the other upon our first relapses when hospitalized at separate times on the same floor at Brigham and Women’s Hospital. The last time I saw her was at the New York apartment where she and Marty had lived for a time. She made us the perfect cup of cappuccino.

Most every Sunday she called Ann, another blog friend with leukemia, who writes on Ann’s Fight. PJ had a horrible case of Graft-vs. Host Disease – trouble with her eyes, an almost unbearable rash, and weakness like I have had from the prednisone prescribed to control the GVHD. She went to yoga, fell down, got up and returned.

She colored her hair and got a manicure to fight malaise when, as she wrote, she felt trapped in the wrong body, having gotten puffed up from prednisone like I did. She participated in the Leukemia andLymphoma Society’s Team in Training effort to raise money for fighting blood cancers and run the New York Marathon. She did it in memory of Dori Brown, who died in 2011 from AML and whose husband, Jim, ran for and wrote about the woman with the beautiful smile on his blog, Run for Dori. In describing her bond with all of us, PJ wrote of “the sisterhood of leukemia and transplant.”

She ran a good part of the marathon, tripped and fell, picked herself up, stopped to have brunch with a friend whose apartment was on the way and then walked more of the course with Marty. She always felt better with him at her side.

Her most recent dog, a Bouvier des Flandres in a long line of them, was blind, but she learned how to deal with this. He knocked her down when near the end she was very weak, but she didn’t complain. After their children were grown, she and Marty had sold their house in Rhode Island with the garden that she loved and moved to New York so they could go out on the town. She wrote about the delicious food she cooked in their tiny apartment and about the great restaurant meals they shared with friends and later about how they bought a house in the country to enjoy the peace and quiet, the sounds of the birds and brook, a place for the dog to run.

She was a voracious reader, posting perceptive observations on her other blog, Word in the Woods. She called David Foster Wallace’s 1,079-page book “Infinite Jest” her Waterloo. We talked about it on the phone. I said I wanted to read it but had never tried. She said she was going to tear it in half, throw part on the floor and read it in pieces. I think she got through a good chunk.

That is how I will remember her, always finding a way.

Saturday, June 28, 2014

Now I'm even losing teeth in my dreams

It could be worse: Bryan Cranston could be my dentist.
I feel awful talking about my teeth when I know people who have big problems like relapses and secondary cancers, but here's the thing: This dental business is giving me terrible nightmares. Maybe it will help to write about it, so please forgive me.

Plus I have managed to crack myself up by finding this photo of Bryan Cranston as the dentist on Seinfeld.

A couple of weeks ago I dreamt that I had gotten together with a friend who dislikes anything artificial. She reached into my mouth and yanked out my bridge, leaving me holding it in my hand and not knowing what to do with it.

Last night in my dream I was eating Tootsie Rolls. These are a favorite that I will never have again. But in the dream I was chewing and chewing, and one got stuck on the roof of my mouth. Out came that damn bridge again. It was the weekend, and I had to go to an emergency room to find a dentist on call. Some women gave me a pain pill. Then in the dream a dentist put me under anesthesia, and when I woke up the bridge was back in.

Separation anxiety having to do with a false tooth! Yikes.

I guess I am slightly traumatized by having lost 11, or maybe 12, teeth. (I kind of lost track.)

But it could be worse.

Thursday, June 26, 2014

Another spot

While I was writing on a deadline for Mount Holyoke this morning I had a distraction: I kept looking at the spot on my other arm and wondering if it needs to be dealt with.

I took a picture that I was going to send to my dermatologist, but after I sent her the last one, she said it looked OK when I saw that it really wasn't, which is why I took me and my right arm to her.

I am not going to post this or any other gross photo because I don't think it's necessary and also when other people do it I have to hold my hand over the photo even though they are probably just trying to be realistic.

The doctor who did my Mohs surgery had looked at the spot on my left arm and said it looked OK, but my squamous-cell radar is reading otherwise. I'm not sure why I didn't ask the doctor who biopsied the spot on my right arm a week ago to look at my left arm except that I thought it was OK, but now that the biopsy on the right arm was positive, I am changing my mind.

I called my fiend Bernarda, the office manager who always gets me in, and asked if she could do it again. I know she is not a scheduler so on the voice message I apologized and said I hoped she wasn't sick of me. But she can at least hold the smooth rock I gave her last time with the word Breathe on it. I think I need one for myself.

In the past I have tried to get a dermatology appointment locally and have been told sure, we'll see you in a couple of months. It's easier to go to Boston, where they know me and will get me in.

Speaking of gross, here's an idea: I could mail my left arm in and save myself the trouble although then I'd have some other even bigger problem.

Wednesday, June 25, 2014

Biopsy report: another squamous cell

Just got the biopsy report from the dermatologist.

The spot was indeed a squamous cell cancer, but it is all gone now.

It's a good thing I got the whole thing removed with a punch biopsy instead of taking a sliver and having to return to get the rest off. It's also a good thing that I noticed it quickly and called, because I had just been looked over a couple of weeks earlier and it wasn't there.

Looking at yourself too closely can have its drawbacks, but it has benefits too.

Tuesday, June 24, 2014

The worry gene kicks in ... again

It is frustrating to be so philosophical one day (Sunday) and to get freaked out the next (yesterday), but is what we worriers do.

You might remember that I could not get that therapeutic phlebotomy because my hemoglobin was 11, not the 11.3 that was required. I had a complete blood test last week locally in between visits to Boston, and Melissa wrote yesterday of the results: The hemoglobin was 10.8 and hematocrit 32.1, a little lower, but not to worry.  Your platelets were 129 which is pretty good.

Being a writer, I scrutinize every word.

"Pretty good?" Is that less good than just plain "good"?

I worry when anything goes down, but I have been told before that if everyone had their blood checked as often as I do, they would see similar fluctuations. Joe said what I already knew, that if Melissa said not to worry, then she meant it. This didn't stop me from writing Melissa, who reiterated what Joe said and told me that I could recheck in two weeks. I think I'll get this done in Boston  because I'll be in town anyway for going with Diane and David to the Cape.

In other news, I got an e-mail from Yankee Magazine saying that I had not cashed the check that they sent me in December for my article on the Crazy Orchid Lady of Shelburne Falls. (I wrote the story in the fall, but with their crazy lead times it is not scheduled to run until this coming winter!) I thought I had cashed it, but it is probably somewhere in between the seats in my car. So they issued a new check.

I have been afraid to open the Visa bill that contains the charge for the bridge that I just had put in my mouth, but now with a "free" $1,400 it might be a little easier.

Sunday, June 22, 2014

Only in New York

Taking a break from a jog around the Central Park Reservoir.
I got to New York on Friday and got everything done that I wanted to do before leaving this afternoon.

I jogged around the Central Park Reservoir and had the best run in a long time at my old stomping grounds. I don't know how far I went, because my distance included getting to the reservoir from Jeanne and Bruce's apartment at East 72nd street, but I know I ran for about an hour, with just a little walking on the way to the reservoir and back. The soft cinder pathway is ideal, and there are runners who set the pace and even a few to pass.

I must have a muscle memory of running there,  because it came back to me like a tennis shot comes back after time taken off. The familiar scenery around the reservoir is always stunning, and there are  plenty of distractions on the road through the park to the reservoir: babies in strollers, old people on benches, dogs of all sizes, people speaking many languages, a little girl telling her mother "No" and then spelling it for emphasis – "N-N-O-O!"

I spent time with Jeanne and Bruce and went out to dinner with them and also with Serena on New York time, which is also Spanish time and actually my own time.

Cat in a box.
Their couch is one of my favorite places to spend the night. The sounds of Third Avenue lull me to sleep, having the same effect as crickets might have for a country person. Their cat, Chloe, a Scottish Fold, is the only cat I have ever liked. Sometimes she acts like a dog. I was going to pick her up, but I think she got scared when I toppled over after getting down on the floor to take her photo.

My friend Pam and I had a strange experience while having lunch at PJ Bernstein's, an uptown Third Avenue deli whose walls are lined with photos of famous people who have visited. It seemed plausible when a large man came in, sang us a song and said he was waiting for Jackie Mason, an old-time comedian who might not be familiar to the younger set but who made an impression on me with his Jewish schtick when we saw him years ago.

Mason had listed his Jewish mother's admonishments when he drove off in his car: "Call me when you get to the corner, call me from the first light, call me from the first rest stop, call me when you get there." I could hear my mother's voice, and now I hear my own.

The man we were talking to, Vincent Grimaldi, said he and Jackie were going to eat pastrami sandwiches and collaborate on new material. In the meantime, he told us he was a Bronx attorney, had run for New York mayor and for president and sued Pope Benedict XVI and the Roman Catholic church. I looked it up and saw that all this and more was true.

The manager said Jackie had just called and was on his way. I wanted to tell the comedian about the impression he had made on me, and we waited quite a while. But it began to feel like waiting for Godot, who might or might not come.

Besides, the main reason for my trip was to visit Aunt Marge and Bill, and I didn't want to get there too late. At 95, Marge still gets her hair done regularly and wears pretty jewelry. She and Bill are happy in their beautiful apartment with a view of the East River. They watch people come and go next door at the United Nations and, with an aide, they go to the little nearby park with the waterfall and even out to eat, Marge in her wheelchair and Bill with his walker.

We talked about how, given the mess that the world is in, we really can't complain and how there is always something to look forward to, such as the Fourth of July fireworks, for which they have some of the best seats in town.

Wednesday, June 18, 2014

Time to get a grip

I could write a book on not making a mountain out of a molehill, but while I am having a serving of cliches with my morning cup of coffee, I must say that when push comes to shove I am not always good at keeping catastrophic thoughts at bay.

Combine my natural tendencies with too much knowledge about the possibility of secondary cancers, and this is what you get. I have been having some GI problems and had already diagnosed myself with colon cancer or stomach cancer when I yesterday I completed the second of two tests my doctor had ordered. It turns out to not be too much of anything except a little Graft vs. Host Disease, and the treatment is the same as for my GVHD of the liver, which is to continue the low dose (2 mgs.) of prednisone that I take daily.

So far, so good, except that a short trip to Boston turned into a 12-hour day with me leaving home about 8:30 a.m. and getting back at 8:30 p.m.

I had called Dr. Lin's office to see if she could look at a spot on my arm on the same day, but when I didn't hear back I headed back home. About 2 p.m. as I drove past her office on Boylston Street, her office manager, Bernarda, called and said she could get me in at about 4:15. I have been worrying over this spot, which looks a little different than my squamous cells cancers, and in my rational mind I thought it was nothing or another squamous cell, and in my crazy mind I thought it was a melanoma.

It turned out to be either a keratoacanthoma, a non-invasive lesion that can look like squamous cell carcinoma, or maybe a squamous cell, but since it is hard to tell the difference, the treatment is usually to remove it. I was going to put a link, but they all come with magnified photos that are really gross.

I had the choice of just getting a piece grazed off to be sent for pathology, in which case I could play tennis but might have to return to get it removed, or just getting it excised (and still sent for pathology). I chose the latter just to get it done with and now have five stitches in my right arm.

As I sat at my computer canceling tennis for the next two weeks (including Judy Dixon's one-day immersion tennis camp, which I had forgotten about), I could hear my father's lament when he put up the flag on the fourth of July and said, "The summer's almost over!" I think he was already counting down to the end of his beloved outdoor tennis season. My mother would always shake her head.

Like father, like daughter, I thought, "The season's so short, and I just took two weeks out of it!"

Time to get a grip, and I don't mean the grip on my racquet. That immersion camp probably would have been too much for me anyway.

Monday, June 16, 2014

Working at home, to a chorus of hammering

There are two white vans in my driveway this morning as I write this, one belonging to the painter, Bert, and the other to the electrician, Ralph.

Bert is outside hammering on the shutters after painting them and the back of the house, and Ralph is upstairs banging on something while he installs a new bathroom fan. Bert, a politics junkie like I am, is listening to NPR while I have on "The Daily Rundown" at the same time as I am getting the day organized.

Things fall apart, and it is expensive to put them back together, but I like the sounds and activity even as I miss the camaraderie and commotion (when it was full) of the newsroom.

Bert, a history major at UMass, became a painter because it was something he loved. He also loves to discuss life and politics, which we do one snippet at a time when he is here.

The pine needles drift from the trees outside my kitchen, where I write. If a combination of leukemia and the decrease in the newsroom staff hadn't cost me my job, I would still probably be working. But I can't complain about being at home, because when I looked across the room to the window nearest my desk in the newsroom, I saw Route 91.

I am lucky to have interesting and varied work now, but with the unpredictable nature of freelance writing, you never know what's around the corner.

I just finished a story for Mount Holyoke on a fascinating trip that students took to Sicily, complementing a class that they had taken on the island's culture, history and literature. This afternoon I am going to Chef Rufus's Full of Flavor Diner in Springfield to write a profile of the owner for Holyoke Community College because the owner went there.

Tomorrow I need to go to Boston for another medical appointment. I don't need permission from anyone but myself to take the day off.

Friday, June 13, 2014

A silly day in Springfield, or much ado about nothing

Today I went to Springfield for my bimonthly appointment to have my blood drawn in a continuing effort to decrease the level of ferritin in my blood.

It had seemed like a good idea to do it at Baystate Health rather than tacking it on to an appointment in Boston so as to not have to either drive home fatigued or spend the night in Newton.

It went smoothly last time, but this time there was a glitch. The finger stick showed my hemoglobin to be 11. My orders said it had to be 11.3.

"Good news," the technician said. "You don't have to be drawn today."

It went downhill from there. "But I want it to be drawn. That's why I came here," I said.

I asked if she or someone else could try it on the other hand because there could be a variation in such a small amount of blood. The same thing happened twice at the donor center at Brigham and Women's; on the first stick it was just a little bit low but the second time it was fine.

The nurse supervisor said it was a good stick and they would not do it again. She said my hemoglobin was just too low, and of course, five years or no five years, the word "low" always causes a residual anxiety to kick in.

A resident came in and seconded the decision not to recheck. She agreed to page Melissa to find out if she would give permission, but Melissa didn't call back.

Since Dr. Alyea had said to get a mid-appointment CBC, I thought that while I was in the hospital, I would walk to the reference lab in the other wing and get that done. But when I got there, they said the standing order had expired and so I could not get that done either.

This whole process of not getting anything done took more than two hours.

On the way home I felt overcome with fatigue, as sometimes happens when I am driving even a short distance, so I stopped at a CVS to get something to wake myself up. I had a Cliff bar in one hand and a bag of mini Snickers in the other. I treated myself to the Snickers.

Melissa called later and said she would have given them the OK to draw the blood at 11.

The appointment will need to be rescheduled.

Wednesday, June 11, 2014

Taking it literally one step at a time

It's not often that people use the word literally correctly.

They might say, "I was literally freezing to death," and you think, "Really?" or perhaps, "I was literally at the end of my rope," and you wonder, "What rope"?

I am happy, therefore, to have this opportunity to use the word correctly, because I am literally talking about steps.

Going up or down without a handrail has remained a challenge. I thought of this over the weekend when I was at a graduation party at a house with two steep steps – with no handrail – leading to the deck. I probably could have ventured up, but instead I asked for an arm, just to be sure.

During my trip last year to visit my cousins in the San Francisco area, I was happy to successfully climb the 378 steps (plus or minus) to the landmark Coit Tower. Luckily there were handrails most of the way up, and for the other parts, one of my cousins offered an arm.

I haven't actually tripped down a flight of stairs, although I did actually trip up the stairs in the Paris Metro after having the fool-hardy urge to catch an incoming train. I bellyflopped onto the train, scaring the living daylights out of Katie and earning a shocked look from the Parisian at whose feet I had landed.

Knowing my tendency to fall (which I haven't done lately, knock wood), Joe once reprimanded me for throwing a pair of sneakers down the stairs when my arms were otherwise full. He was afraid that the clamor had been me.

The New York subway, which I plan to take during my visit to the city next weekend, is not the easiest place to need a handrail, because sometimes you have to push your way through to get to the side.

But the stairs leading up to the post office in Holyoke are just right. I had to be in Holyoke for something else, and I decided to go to the post office there rather than in South Hadley, because for some unfathomable reason, easy access to the entrance was eliminated during a highway widening project some years ago.

Rather than go to one side or another so I could use the handrail, I walked up the seven or eight stairs in the middle. I kept my balance. I walked up without tripping, and I walked down trippingly.

Literally, a success.

Monday, June 9, 2014

Common sense kicks in

I got up to 2½ miles one day last week, which is not where I want to be but better than zero, the point at which I restarted after kidney surgery last summer and a spate of prednisone-induced crippling leg pain.

It's no fun until you find your stride, but I am trusting that I will get through it.

A couple of days after I ran that distance, I set out to do it again. I am going on the upper lake because I figure if I trip and fall over a root or a stone, I am so slow that nothing much will happen. But also I'm paying careful attention.

It was hot on that second try, and close to the end of my second loop, I grew unsteady and totally lost my form. Then the voice of common sense came out of my mouth: "You're going to go flying"! I changed to a walk, and as luck would have it, a friend came running up behind me. We walked a bit together, and she said what I already knew. "No one day is like the other." Some days you have it, some days you don't.

Besides, there's nothing wrong with walking.

The saying is trite but true: "Better safe than sorry."

Friday, June 6, 2014

Survivorship event a celebration of life

With Boston Mayor Marty Walsh
This is the third week in a row that I have gone to Dana-Farber, but unlike the usual, this one was for fun.

I don't usually do these things, but it worked out with my schedule, so I went to Dana-Farber last night for the annual cancer survivorship celebration, Living Proof, and I'm glad I did. Some 200 people gathered for an evening of food and music and a speech by Boston Mayor Marty Walsh, who was treated at Dana-Farber for the Burkett's lymphoma that he had at age 7.

I used to be shy, but my years of asking people questions for newspaper stories turned me into the opposite, so I enjoyed sitting with a family I hadn't previously known: a breast cancer survivor, her husband and their daughter.

I was next to Dr. Edward Benz, president of Dana-Farber, at the buffet, and I told him that I had had four bone marrow transplants, that his people did good work, and that I was a big cheerleader. He seemed impressed.

It was the only social event where people could actually ask each other what kind of cancer they had without being rude. I exchanged diagnoses with a woman in the elevator, for example. She told me she was three years out from ovarian cancer and I told her I was five-plus from leukemia. We each congratulated the other. You could pick out the survivors through the "Living Proof" pins we received.

I talked for a bit to to Dana-Farber's staff photographer, Sam Ogden, who has become a friend through living on my sister's block. He and his wife, Cindy, are both cancer survivors, and we share a special bond.

After the mayor spoke, I joined the line of people wanting to greet him. Everyone told him their diagnosis or their relationship to someone with cancer. Just as you might introduce yourself with the year of your graduation at a school reunion, I said, "Ronni Gordon, leukemia, four transplants."

I congratulated him on
his accomplishments and said I would have voted for him if I lived in Boston. Then he told me I looked great, and Sam took our picture.

Tuesday, June 3, 2014

Dog training, continued

Taking a break from training
The training with the gentle leader is going well.

Maddie quickly associated it with food, and now every time I feed her I put it on, and also every time she gets a treat. I even walked her with it on, keeping the halter collar on also so that I could switch when she got tired of the gentle leader. She definitely does not pull at all with the new collar in place.

I also practiced getting her to associate little dogs with something good, in other words food. We passed four little dogs the other day, and each time I gave her a treat. I am also going back to the old clicker that we used when first training her. I knew she would respond to it because I have kept it in a drawer, and if I pick it up and click, she comes running.

I'm afraid I sounded a bit odd, telling her how adorable each small dog was, then clicking and treating and telling her she is the best thing in the world. I had no idea if there would have been a problem with these dogs. One, definitely not. He came over to us wagging his tail, and our two dogs gave each other a nice hello.

I'm going to try it again today.

Monday, June 2, 2014

How not to get back into running

1. Get dressed in running stuff, including new blue shoes bought for inspiration.

2. Drink disgusting medicinal mix  – a daily must-do on empty stomach – and figure I can't run now because stuff will slosh around in my stomach.

3. Make blueberry pancakes. Add fried egg and syrup with a side of fruit.

4. Drink coffee, write e-mails, check Facebook, take 15 pills.

5. Start the Sunday Times.

6. Have second cup of coffee with banana bread.

7. Watch the French Open.

8. Scarf down salad while speed-reading through book after finding out that author is available only
in the next couple of hours.

9. Interview author.

10. Walk the dog, get over-heated, take a nap, eat pizza with Joe and say to myself, "I'll think about that tomorrow."

Sunday, June 1, 2014

Mom and Dad to the rescue

This time of year reminds me of two times that my parents had to "rescue" me.

I put the word in quotes because I wasn't in such dire straits as I made myself out to be.

The first episode happened earlier in the spring of 1974, when the cherry blossoms were out on the Vassar campus. I thought of this today when the weather turned from soggy to sunny and Maddie and I walked around Mount Holyoke, so beautiful with the trees in still in bloom.

Near the end of the spring semester at Vassar, I came down with a high fever and a terrible case of strep throat. After landing in the infirmary, I called my parents in tears and said they had to come. They rushed from New York City to Poughkeepsie, expecting, from the sound of my voice, to find me languishing in a dark room.

Instead, I was in a pleasant room with a view of the beautiful trees, being attended to by a nurse who was applying cold washcloths to my forehead. My mother really got a kick out of this episode, and she told it over and over.

It was around the same time of year when I was about to get my master's in journalism from Boston University. I had the inverse attitude of when I called from the infirmary: I said it was no big deal and they didn't need to come. But at the very last minute I had a change of heart...and they hopped on the shuttle to Boston, arriving just as I was getting my diploma. I could see them waving to me from the audience.

Of course my mother didn't need to be asked when she rushed to my side for the beginning of my chemotherapy some 10 years ago. My father would have done the same had he been alive.

People say I've been pretty stoical throughout the bad things that have happened to me. It's an interesting about-face for someone who was such a drama queen.