Thursday, March 23, 2017

Dermatology doubleheader and alphabet soup

A post from a year ago, A Little More Pain Today, came up on Facebook with a photo of me standing right near where I'm sitting at Diane and David's house in Newton waiting for more pain to be inflicted on my face this afternoon.

The funny thing is, I do not remember what it was. They all blur together.

The theme for this week is alphabet soup, ECP and PDT.

Internal sunburn yesterday, external today.

ECP: Extracorporeal photopheresis, what I refer to as the blood therapy or sometimes the blood thing, for my graft vs. host of the skin. I talked to another relatively new (to me) doctor yesterday, our second meeting. Sometimes they don't know what to make of me. I said I had played tennis that morning and over the weekend ran (or whatever you would call it) a 10-K race.

It is so much better with the angio needle. I was even able to get up and go to the bathroom without worry of it infiltrating. A new nurse (who had come over from Mass General) took care of me. He was a character, telling me it was his first time but he would try to do a good job. I don't remember exactly what I said but I gave it back to him.

"Like returning a slice with a slice," I said.

Today, PDT, or photodynamic therapy, to remove precancerous cells and any tiny cancers from my neck and face: "a treatment that uses a drug, called a photosensitizer or photosensitizing agent, and a particular type of light. When photosensitizers are exposed to a specific wavelength of light, they produce a form of oxygen that kills nearby cells."

This hurts a lot. I don't know why people do this sort of thing cosmetically. You hold a tiny blower in your hand and move it around while you feel like you're getting the worst sunburn ever. I can't remember the exact time. Maybe 16 minutes. Maybe I should imagine that it is wind blowing on a beach.

Oh and I might also get a biopsy on a weird spot on my calf. Just as the one on my ankle has healed nicely.

Then back home around four. Nothing much tomorrow because I will be carless. That squeaking sound turned out to be a call for new rear brakes. Better write up a storm to cover that.

In between, a good dinner with Diane last night and upcoming brunch this morning with Rook, who is going to be kind enough to drop me at the dermatologist's office in Brookline.

The procedures will not be fun but it's always nice to see my primary dermatologist, Jennifer Lin, who will weigh in on how she thinks the ECP is going. She's the one who used to talk to me about dating. While freezing spots off my skin. Now she is happily married and a new mother. I assume she will ask about me. I'll have to think about which stories to tell her this time. Or not.

Sunday, March 19, 2017

Last (at Saint Pat's Road Race) but not least

With Ben and Carly before the race
Five years after my fourth bone marrow transplant, I ran the Saint Patrick's Road Race again after being a little hesitant about doing it, as I wrote in this post from 2012, St. Pat's here I come. I was concerned about how slow I would be, but Ronald Berger, the doctor who did the blood tests leading to my leukemia diagnosis after the 2003 race, said to me, "You'll probably be the fastest bone marrow transplant patient out there."

I was super slow back then, but there were plenty of people behind me. I ran it the next year but not the past few. My decision to run it this year was not made through careful analysis of the difficulties of the course and my even slower speed. (Notice that the passive format, as in, "Mistakes were made," takes some of the onus off of the speaker, whereas the more proper, active form, would be, "I didn't carefully analyze...")

I signed up because the friend who gave me the idea of doing the 5K Hot Chocolate Run and who went to the race with me said she had signed up for Saint Pat's. I thought it would be fun to do it together and around the same time also had an appointment with Dr. Berger. He is a fast runner, a "real runner," which is not to say that the rest of us are fake runners, but he at another level. The times I've been on my feet when I see him, he asks, "You going to do the race?" When he asked at my last visit, I said I had been able to run about three miles after seeing a chiropractor for toe pain.

He said if I could run three miles, I could do six, even if I walked a little. I asked if he would help me if I needed him at the race. It was a sorta joke.

So I signed up. I increased to five miles with hills a couple of times and did one six-miler and that was that. I was slow but figured I would pick up the pace in a crowd.

Joe was dubious. (I could understand his point of view since he literally picked me off the ground more than once.)

"Are you going to make the doctor's appointment before or after the race?" he asked. I said it was doctor's orders.

I was going to do some short faster runs to increase my speed as I had done in the past but it was super cold on most of the days leading up to the race. And on one day we had a blizzard.

So, on to race day: Excited to be in a crowd of more than 6,000 runners. At the last minute, the friend who got me interested had another commitment and couldn't go. Disappointed but you make instant friends anyway, for example, standing at the truck where volunteers were giving out bananas and water, I told one woman the four-minute version when she asked if I had run the race before: Did it when it went through Holyoke Community College about an extra two miles, got sick, got better, ran again.

Then: Go to the group at the back with the black flag marking slowest. Oddly, stand next to a woman and in sharing our stories, find out that some 30 years ago, her mother died of AML, the same thing I had, before they had all the techniques that saved me. We gave each other a hug.

The race began. I trotted along at my own pace. The first hills were OK. An ambulance crept along beside a group of us, and we joked about wondering if the driver was anticipating a problem. The crowd opened up, and past mile four I was only with a handful of people. My side and knee started to hurt. The "trail vehicle" crept along beside me, creeping me out, an eyeball looking out at me from the passenger seat. My back and my knee started hurting, but I was in some kind of zone (not the good runner's high zone but rather the stubborn runner zone) and it didn't occur to me to hitch a ride to the finish.

Dark humor came into play as my stride got more jagged and I imagined the headline, "Four-time bone marrow transplant recipient succumbs during 10-K road race."

I got a lot of love from the spectators, though. I must have been really bent over at the point when a boy came off the sidewalk and asked if I wanted gatorade. I said no. I also didn't drink any water. I was too focused. I tried to use yoga breathing to get myself to stand up but it didn't work. Around mile five I thought maybe I should walk but it was actually easier to do what at this point was a so-called run. I heard cheering behind me so I figured I wasn't last.

But they must have dropped out because by the time I neared the corner where you turn towards the finish line, it was only me. A police officer offered a ride down the stretch where I used to pick it up.

I think my best finish was about 54 minutes. The race during which I knew something was wrong, it was about an hour. I have blocked out the exact time yesterday but I have to say it was close to two hours.

A kind race official in a yellow jacket extended a strong arm as I rounded the corner. I took it and stood a little taller. We did a little walk/trot towards the finish line. Ben and Joe's girlfriend, Carly, who had run the race, and Joe, who had watched, met us. We moved in unison towards the finish line, like travelers following the yellow brick road, with Carly holding on to one arm and the nice official onto the other. Carly said she would go before me so I wouldn't be last, but I said it was OK because I knew she had already finished in a good time. We did a little hop over the finish line.

Some police officers and an emergency medical person came and looked me over, looking concerned. They asked if I needed anything. I went into the medical tent and sat for a few minutes, eating a banana and drinking water. I held onto Joe's arm and we walked to race headquarters, where I got a chair massage. Then I had a hotdog and we all went home.

I said I was a little embarrassed but they all said it was great that I finished. I'm sure that if I had done the reasonable thing and stopped at four miles, they would have said that was great too, and probably even better. I wasn't absorbing all of what they said but one of them pointed out that the other finishers in the race have likely not been through what I've been through, and also people had dropped out, and also most people don't even try it.

Ironically, I was worried about my toe and heel, but my knee and back ended up hurting. You never know.

Yesterday I went to yoga, walked a little, iced my knee, lay on an ice pack on the couch, and tweeted:

Finishing last in a race: Ibuprofin, ice and wondering if I should congratulate myself for slogging through or feel embarrassed.
Marathoner and fellow cancer survivor Julie Goodale wrote:
Last is always worthy of congrats! You finished. But more importantly, you started. Good for you!
And there's always looking it up to hear other stories. I found them in this story from Women's Running: What happens if you finish last in a race? It obviously always has to be someone.
The writer, who is a runner, wrote:
After many events and hundreds of miles, my only regret is never telling the final finishers how their journeys inspire me. Sure, the fast runners are impressive, but the back-of-the-pack runners have tenacity that’s more important than speedy times. What happens if you come in dead last? You finish! 
The race means a lot to me and so it's hard to close the door on it, but if I do it again I'm going to have to work on getting a little faster. In the meantime, I might do some 5Ks. Not hilly ones.

11 hours ago
Finishing last in a race: Ibuprofin & ice & wondering if I should congratulate myself for slogging through or feel embarra

Tuesday, March 14, 2017

Stretching and slogging before Saint Patrick's Race

Doing a plantar fasciitis stretch at Kraft Family Blood Donor Center
Mark Zuckerberg was kind enough to send me a memory from this time of year in 2012 when I wrote that my training for the Saint Patrick's Race was going well – I had run six miles with no problem – but I was worried about the twinges of plantar fasciitis.

Well something is the same: The worry about plantar fasciitis. I think if you counted the number of times over the course of this blog that I mentioned concern about the dreaded heel pain, it might equal or exceed the number of times I expressed worry about leukemia.

At ECP last Wednesday, a doctor and a couple of nurses were all sharing their experiences with and cures for plantar fasciitis. One of the nurses demonstrated how her doctor told her to stretch, and when I got out of the bed I tried it for myself.

A new-to-me resident is overseeing me because I went to a different time slot, 4 p.m. instead of 3. My nurse, Esther, told the doctor that she never saw anyone with graft-vs-host as active as I am. I told her that I still had ripples in my skin and the feeling of a band around my stomach, but the procedure has softened my skin, lessened the swelling in my hands, and important or not depending on your point of view, helped my tennis game.

I'm still planning on doing the race, but the weather has not been conducive to running, and I can't say as I could five years ago that I have run six miles. I did five, so slowly I'm not even sure you could call it running.

Saturday I went to spinning, and on Sunday I ran three miles. I would have gone today but I didn't because of the snowstorm, during which my only activity was going out into the driveway with Maddie. A huge black Lab, about as big as our dog Winnie, bounded into the driveway while her owner shouted from across the street. Maddie seemed to be intimidated because she lay down in a totally submissive position.

I'm not sure when the roads will be cleared enough to get in a good run. I hope I can do it at least once. I would like to not be the very last person to finish. As previously stated, I have gotten incredibly slow.

The other night I dreamt that I was on a dance floor, shimmying up and down. Joe was off to the side watching, and I wanted to show him how I could go all the way down and back up without falling. Up and down. Down and up. It was easy! (When Joe was living here he never wanted me to crouch down on the floor to kiss him goodnight if he was sitting on the floor in front of the TV: He thought I wouldn't be able to get up.)

Interestingly at a tennis clinic the next day, George said I was doing my best forehand slices by bending my knees and leaning over closer to the ground than during a regular swing. So in my dream I was sort of modeling the movement.

Tuesday, March 7, 2017

From cancer nightmares to flowers and writing

Inside the Smith College bulb show
Over the past few weeks I have gone to more than my usual number of Survivor Journeys blood cancer support group meetings in Enfield and Agawam. It was because I wrote a profile for Dana-Farber on the physician who started the groups. Like me, Jay Burton had AML and is a Dana-Farber patient. (I started to write "was" a patient, but changed to the present tense because once a patient, always a patient.)

One discussion topic lodged in my subconscious and came out as a bad dream. Some attendees who had had Non-Hodgkin Lymphoma were talking about the stages at which they were diagnosed and the tumors they had. AML is a different disease that is not staged and that does not come with tumors, but tell that to the voice in my subconscious.

I dreamt that someone looked at the lipoma that you can see through my yoga pants and said that it looked dangerous and should be removed. I said that it had been tested and wasn't harmful. But the person looking at it said it had grown too large and I should really have it rechecked because it might be cancer after all. Blech. Well in reality I'm going for a checkup tomorrow before the light treatment so I might mention my dream.

On Sunday I met Joe in West Hartford, approximately half-way between us. We had lunch/brunch at Effie's Place, a family restaurant that was as good as it looked on the internet. He is not crazy about the idea of me running the Saint Patrick's Race.

"Are you going to make the doctor's appointment before or after the race?" he asked.

As we used to say as kids, "So funny I forgot to laugh."

I don't buy a lot of new equipment, but I decided I should get a new pair of running shoes. (Brooks Cascadia, really a trail-running shoe but a good fit for my orthotics.)

It was that super cold day but when I got home in the late afternoon I got it in my head that I would try them out by running up Cold Hill. I wasn't that cold so I kept going and got committed to finishing a loop of a little less than four miles. By that time it was getting dark and I felt the cold.

With Literacy Project students Chris and Alyea
The next day, and into today, I didn't feel so great. Not too bad but not great...that feeling that you're coming down with something. So I took today off. My exercise consisted of going from The Literacy Project to the Smith College Bulb Show with our class. I had a memory that involved two of my children wanting to be in a photo with my parents and the other child not wanting to. We took a solo photo of the recalcitrant child, and later my mother did her own version of photoshopping: cutting out the photo of the solo child and putting it next to the group.

I missed my mother.

She would have appreciated the fragrances and the colors and the arrangements.

I told Zoe (the teacher) that I like to think she is around.

When we got back, everyone wrote impressions of the day.

I was helping one man whose mind goes faster than his writing. He jotted down some descriptive words not connected by verbs. He told me he gets confused.

"Stop and tell me what you're trying to say, like you're telling your wife," I said. "Keep your sentences short."

And so that's what he did. He seemed happy about it.

A little. Newspaper training. Goes a long. Way.

Monday, February 27, 2017

Adding hills and miles heading toward's St. Patrick's Road Race again

It recently occurred to me that if I can run three miles, I can run another 3.2, in (as I write this), 19 days, 5 hours, 20 minutes and 3 seconds.

That would be Holyoke's St. Patrick's Road Race, the hilly 10K which I used to run all the time but have not run in a couple of years. Last week when I saw my internist, he asked if I was going to run. When I told him that I had gotten back up to three, he said he didn't see a reason why I couldn't do the whole thing even if I walked a little. Doctor's orders? My stamina is good, possibly because I run so slowly that when I did the Hot Chocolate Run, I asked a person on the sidelines if I was walking or jogging. She kindly said I was indeed jogging.

My only problem is my right foot. The big toe and, gasp, yesterday after a five-miler, a twinge in my heel. Working on both of those things.

The other day when I decided to add some hills and get off the route of running around the lakes at Mount Holyoke, I headed out Ferry Street and went to Brunelle's Marina and back, about four miles. It was good to be on the open road, looking at the river and hearing the sounds of birds and wind chimes. I never ran with music because I like to listen to what's around me.

I'm thankful to Carol Constant for giving me the idea that I could run in a race again when she suggested we do The Hot Chocolate Run to support Safe Passage and its executive director, our summer tennis teammate Marianne Winters.

Yesterday Carol and I did five hilly miles. I felt a little bad that my so-called run was equivalent to her fast walk, but she didn't seem to mind, and we spent the time telling some stories. After a bit of this I told her to go on ahead so she could get a real run.

I said something along the lines of "I don't know how I got so slow. I walk much slower too."

This might be comparable to being hit on the head with a hammer and wondering why your head hurts.

Carol set me straight, saying anything I do at this point is great.

I had been having trouble with my blood pressure and briefly went on medicine. I was convinced it was situational (surgery, lack of exercise, Donald Trump) and when two of those things but alas not the third settled down, I got permission from Ellen, the PA at the light therapy at Dana-Farber, to stop taking the medicine and check with my internist. I saw it go down after I started the day with a brief recorded meditation while sitting next to Maddie on the couch.

As all dog lovers know, this is powerful medicine in itself.

Tuesday, February 21, 2017

What you don't want to hear in the dentist's chair

"CRAP," the dental hygienist said as she stuck that metal pokey thing in the back of my mouth yesterday.

The realization of all my dental nightmares flashed before my eyes.

"What?" I asked in a panicked tone.

She laughed and said she was sorry. She was just upset that she had forgotten to change the TV off the soap opera. She hates soap operas.

After rinsing, I told her that she had worried me along the lines of how a patient feels when, not fully asleep during anesthesia, they hear a doctor say "oops."

I looked up at the TV screen on time to hear a woman cry, "I'm never going to see my baby again!"

"OH NO!" I said.

"What?" asked the hygienist.

I told her it was just the TV.

The dentist's office is my "Cheers," where everyone knows my name. I have as much fun there as is possible. While we were waiting for Dr. Debian to come in and check my mouth, Leah gave me some pointers on the Words With Friends game that I had been playing while I waited. I had thought of a good word but then it would open up a triple letter combination.

Dr. Debian was pleased to hear that I am keeping my mouth guard in. Some of my teeth are already worn down some from grinding. I would have gotten the mouth guard sooner if I had known.

But the good news is that I had no cavities and was able to leave with my remaining 20 teeth intact.

Sunday, February 19, 2017

Thinking of my father on anniversary of his death

On Thursday I sat down at my laptop to look for a photo that I had in mind, and by accident I somehow hit archived older photos and this one of my father popped up.

There he was smiling at me when I realized it was Feb. 16, the 15th anniversary of his death. Time flies. Time stands still. It seems like yesterday that we were at Mount Sinai Hospital watching him take his last breath, and the day after that when my mother and aunt were in a coffee shop and nearly fell off their seats when they saw people wearing sweatshirts bearing his name – Alfred Gordon – and they learned the people had gotten the sweatshirts after running the eponymous race around Central Park practically under his window on the day he died, and just a few days before (even though it was many years) when he had been getting the grill ready at Atlantic Beach after my mother made her famous hors d'oevres to have under the striped awning with the flower pots hanging from it.

But it is 15 years. Diane emailed a couple of markers. Before I was sick. Before we knew about Obama. Al Gordon words: You can't complain. (Even when he could). Long good life. Both parents well into their 80s. Other fathers dying young. Many tragically. But you feel what you feel. Sometimes I feel like they are really here. The quarters that he tells my mother to drop from heaven in case I need them for parking meters. They think of Katie too. Just the other day she found one exactly when she needed it.

Now it's not like the punched-in-the-gut and dazed feeling from the day he died, when Diane and I walked down Fifth Avenue before heading over to Madison to pick up paper plates and such for the people who would be coming over. We marveled that they were walking around just like it was a normal day.

The earth didn't open up like I thought it would, but I'm sure I'm like everyone else in that on anniversaries or holidays the tug at the heart is greater.

My eyes welled up as I sat on a kitchen chair and looked out at the backyard. Maddie came over and sat next to me. I gave her a little pat.

Later when the day had gotten away from me, I realized that I hadn't finished the book for book group that night (Underground Railroad) and I hadn't exercised. It was raw outside. I texted a friend who I had told earlier about the anniversary and the appearance of the photo. "Exercise or finish the book?"

She asked how many pages and when I told her about 70, she said I could do both. Then she asked, "Lazy or not feeling well?" I wrote back that the unwell feeling was emotional, not physical. She said I should go do something because that's what my father would want.

I laced up and although I didn't measure it exactly, I ran about three miles. I came back and finished the book just a few minutes before 8 p.m., our meeting time, and went and got together with my friends. We go to the same house all the time so I didn't have to fuss. We all bring whatever, and on that night we happened to have a gorgeous healthy spread. (And wine.)

I had been reading the book on the airplane to Florida marked several of  Colson Whitehead's striking metaphors to share. In the book following the path of an escaped slave, the railroad itself is actually real, though. In giving him the National Book Award, the judges called Whitehead one of our most daring and inventive writers. We had an excellent conversation about it.

We also tell stories and laugh a lot, so that by the time I left, my mood had lightened. My father ("the walking dictionary") would have liked this part of the day also. I like to think of him taking a break from his tennis game in heaven, and taking it all in. And why not?