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?

Wednesday, February 15, 2017

Bad dreams about skin, good night with the Dems

Eight years out. Fewer relapse nightmares.

Graft vs. host disease, mostly of the skin. More dermatological nightmares.

For example, in my dream last night I was going to Florida. Or maybe summer camp. It wasn't clear, but I had to pack for warm weather. When I got there, my first thought was that I didn't want my parents to leave. The second was that I had forgotten my bathing suit.

Some other women (girls?) said no problem, they had extras. So I took one and went into a bathroom and tried it on. It was a two-piece with a top that didn't fit over my stomach, which in real life has popped out due to the GVHD of the skin. (No, it is not the same as normal aging, it is what the doctor described accurately as feeling like a band.)

I thought I would just wear a shirt over it. Everything seemed OK until I looked down and saw some raised spots on my abdomen. I went to a doctor who paged the dermatologist. The doctor said he wasn't sure but he thought the new spots looked ominous. I was seriously distressed.

I woke up in a panic.

Then ...

I gave Maddie her morning hug and went downstairs and had half an orange and opened up the free guided meditation that I have bookmarked and did a 10-minute (well, 9:52 min) calming meditation. Then cereal and off to fun tennis (pills, water and coffee in the car), then Starbucks to discuss the headlines, home to walk the dog and this evening, attending a meeting, "Mobilizing the Democratic Party from the Bottom Up: Using our most strategic political tool to resist Trump and reclaim our democracy," held before the Northampton Democratic City Committee's Caucus.

I rode with neighbors from the South Hadley Democratic Committee. After they explained caucusing to me, it sounded interesting and important enough that I might want to get involved with the local Dems. All in all, I got a boost from the commitment and enthusiasm in the packed auditorium at Smith Vocational High School. The pizza was good too.

Thursday, February 9, 2017

Fun and running in the Florida sun

Hollywood Beach
When #WorldCancerDay came around on Saturday, the second day of my mini-vacation to Florida, I thought about how I don't need a day to mark it. A lot of people were tweeting with the hashtag, but although some aspect of it is never far from my mind, I couldn't think of anything particular I wanted to say. My pinned Tweet says it all.

I did do one related thing: Talk to someone from the Gift of Life, the bone marrow donor program that found Denise for me. I said I would register for their Boston 5K this spring and write my story for them. I've done this kind of thing many times: "XX years ago, so and so couldn't imagine running the xx-mile race, but she is training for it now, thanks to such and such organization that made it possible."

In my case that would be, "Eight years ago I needed oxygen after struggling to walk just half the length of a nurses' station, but on April 30 I'll be running...."

Being in Florida for five sunny days gave me the chance to run an easy three miles on flat palm-tree-lined streets. On my last day I added that same distance in walking because (ahem), when I got back to Deb's place and reached into my pocket, I couldn't find the key. Not wanting to bother her during her busy day, I decided to retrace my steps. First I needed water. Unless I was going to drink it from the pool, I would have to knock on a door that had some sound of life coming from the other side.

Some nice people from Quebec took care of me. A woman in the kitchen explained to her husband, "Elle a perdu sa cle´" to which I added, in my best high school French as I drank the water, "Je suis un idiot."

With Deb at Margaretaville
I retraced my steps but came back empty-handed and called Deb. She met me in the hall. Before opening the door, she looked me over and asked, "What's that in your pocket?" Duh. The key. Which had slipped down deep into my pocket like the part in your coat that catches your change. She pulled out a few dog treats and unearthed the key.

"What am I going to do with you?" she asked. "Send you home, I guess," she replied. I was going home anyway. Although feeling silly, I at least felt like I had enough exercise that day.

Her condo is a short distance from Hollywood Beach, where we had walked the first night on the broadwalk (not a boardwalk because it isn't made of boards) and taken a quick tour of the glitzy lobby of Jimmy Buffet's Margaretaville.

The beach is crowded, but but you can still find your spot. I covered up from head to almost-toe because that's the way it is for me now post-squamous cell. It was wonderful anyway, and I would have liked to bottle the sea air.

I floated in the blue-tinged ocean that was almost as calm as a bay. Lying on my back, I thought of my mother, who used to float that way and put her hands behind her head and close her eyes. Hi Mom, I said, looking at the sky.

With Nan at Fairchild Gardens
The next day, when we drove down and found a spot better than Deb had expected, I also talked to my father, who I like to think guided me there. I tweeted my remembrance of the kids saying "Thank you grandpa" after he had died and we found the perfect spot in front of the apartment when visiting my mother. (This all stems from the lengths to which we could discuss finding a spot "that's good for tomorrow.")

In addition, I had a great but too-short visit with my high school friend Nan. She took me to beautiful Fairchild Tropical Botanic Garden, where we walked around, had lunch, and caught up with our news. It was also fun to meet her children. (And we got this old how?) A dancer and personal trainer, Nan is very Zen. I asked if some of that could rub off on me. It was hard to totally avoid talking about The Thing that has overtaken Washington, but at least we circled back to the good stuff.

I also said I wanted to go to that waterfall where we've seen photographs of her with her son and daughter.

She said I'd have to go to Hawaii for that.

"Settling" for Florida wasn't too hard to do.

I write as I look out my window at the blizzard.

Tuesday, January 31, 2017

A long way from there: remembering the night of my 8th (re) birthday

With my donor Denise Ledvina when we met in 2011
In looking for my blog post from Jan. 31, 2009 – the date of my fourth bone marrow transplant – I scrolled through posts from later that year when I was at Dana-Farber a lot. In this one from that September, headlined No transfusions!, I wrote:

This week's clinic visit was a shocker, in a good way. I didn't need any transfusions! I had gone ready to spend the day, and I hardly knew what to do with myself. Well, I can say for the first time in a long time that I didn't spend the whole day at Dana-Farber.

Platelets were 21, still very low but up from 10 to 12, where I've been hovering. My hematocrit is pretty low – 25.3 – borderline for transfusion. But since I've been doing a lot of walking, and even a little tennis, I seem to have adapted, although I am kind of sluggish. The fewer transfusions the better, so they let me go because I feel OK. My white count is normal, 6.6, and my potassium and sodium are about where they should be, although the sodium is still low. I guess I need to eat more potato chips.

For a reference point, normal platelets range from 150-450, and normal hematocrit for women ranges from 34.9-44.5

Those platelets were pretty low for running around playing tennis. It's a good thing my friend Donna didn't know or else she wouldn't have let me.

The comments struck me more than the low counts, though, from back in the day when people commented on the blog instead of on Facebook.

PJ (aka Patricia), Ann and Dori, fellow leukemia patients who also received more than one transplant, congratulated me, as they had done on the date of my fourth transplant eight years ago today. We did that for each other when reporting our successes via our respective blogs. We also commiserated and even darkly joked when things went wrong.

Now of course they are all gone, and while I think of them often, I do so even more on anniversaries like this one.

Patricia and Dori had the same nasty disease as I had: acute myeloid leukemia, or AML. Ann had an even more toxic kind but did not die from that. Cause of death was a squamous cell cancer that appeared on her tongue and then spread through her body. This is where luck, good and bad, comes in. I remember clearly lying on my couch and talking by phone to Ann and Chris in New Orleans, telling them what it was like to have the same procedure that Ann would be having, a scoop taken out of my tongue. Except a dental surgeon found mine when it was pre-cancerous because of the "good luck" of needing to have 12 teeth removed. (One or two at a time over a period of a couple of years.) The surgery on my tongue hurt like HELL for a long time. But that was that, and now I only go once a year to see the head and neck oncologist.

I especially miss Patricia, because we lived near enough to see each other and become real friends. We had so many similarities, we even called each other doppelgangers. (Three kids, runners, dog-lovers, Dana-Farber, AML...) We paralleled each other until her death in 2014. She had such a terrible time in the end.

I think if I got morose, Patricia would tell me to snap out of it, because that's the sense of humor she had. So I'm going to look back at the date without tears.

PJ, aka Patricia Jempty,
Jan. 23, 1954-June28, 2014
Jan. 31, 2009: New stem cells, signed, sealed, delivered

If you want to read the linked post, you'll see how I waited with anticipation and nervousness for the cells to arrive and how my nurse, Helen, monitored me closely while the stem cells flowed out of an IV bag into my catheter. I usually tell people that the infusion of the stem cells is not a big deal. It wasn't for the first three, but I guess I blocked out what happened near the end of the fourth.

I started shaking vigorously. My heart rate skyrocketed. Helen gave me 25 mg. of Demerol, which didn’t stop the shakes. She paged a doctor who rushed in. I got another dose of Demerol, more Benadryl, hydrocortisone and some Tylenol. They put me on oxygen.  Everything calmed down in about half an hour, and, after soaking through two hospital gowns, I finally got a few hours sleep. 

Today I am a little puffy and bleary-eyed, and I’m starting to feel the beginning of the predicted mouth sores. Somehow, my platelets went up overnight on their own, from about 10 to about 40, so I don’t need any “products” today. I think I will take that as a good omen.

Diane brought me a birthday present yesterday: a card with a pop-up bouquet and a bag filled with the other kind of product that I now need after my transplant. It contained shampoo, conditioner, lotion, body wash and lip gloss, all in pretty perk-me-up colors. (After transplant, you’re supposed to start with everything clean and new and throw out old products.) On the card, she wrote, “Here’s to a wonderful and healthy life with your new mystery donor!”

Last night, as the evening weirdness settled in on me, Diane reminded me, “You’re getting another shot at a whole new life. It’s great. It’s the miracle of modern science.”

So here's to modern science; and to my donor, Denise; and to Dana-Farber, and to everyone who helped me get through it. Here's to luck.

And here's to PJ, who commented at the end of that blog post:

"Sounds like your body had a wild party last night. My heart rate went up just reading your post.
Here's to the mahvelous miraculous new you."

If you want to learn about how to become a donor to save the life of a person with blood cancer, go to BeTheMatch, formerly called the National Bone Marrow Donor Registry.

Monday, January 30, 2017

A baby visit and a (re) birthday

Musician-in-the-making
A little experiment with my blood pressure monitor shows the effect that reading about politics, and the opposite, sitting quietly, has on me  (and probably on some others).

 When I took it after glancing at all the bad news on Twitter this morning, it was 154/77. I took it about five minutes later after closing the cover on my laptop and sitting for about five minutes, and it was 103/78. I don't know what to make of it when the upper number is high and the lower number is normal, but in any case in looking at the top number I could see the difference.

I'm sure it was fine on Friday because I had such a good time when Nell and Ben came to visit. We took a little walk with Maddie, but it was too cold and windy, so we had lunch and played inside. She enjoyed sitting at the piano that my parents gave Ben on a day that seems like yesterday. I sent it home with them to go with the other instruments in her "band."

She also liked "talking" on two old remotes. I'm not sure why I'm keeping them. Maybe for nostalgia because I don't like the new system with the blue talk-to-me button. Or because they're good pretend phones.

As I've gotten back to exercising, I can feel the repercussions of the three-week gap the most in yoga.

On Thursday after class, I knew that my arms would soon be sore from doing down dog and plank. On Saturday as soon as we did the first pose, I realized how sore my forearms were. I thought, maybe I should leave. But of course I didn't, instead doing child's pose when I needed a break.

I also did legs up the wall when they did box pose for handstand preparation. Way back before leukemia, I had been able to do this with help from my teacher, Erin, who had me put a strap around my forearms to provide a sense of stability.

I am better at acknowledging without judgment "that was then, this is now" with yoga than I am with tennis or running, when I sometimes compare what I used to be able to do with what I can do now. The metaphor of the yoga class is one of sticking around and doing something that's good enough for that moment even if not as advanced as before.

In any case, today at tennis I hit some pretty good net shots and had some long rallies. This is a lot better than I could do eight years ago, when I could only walk around my hospital room or the nurses' station or sit in my chair or lie in my bed while awaiting my new stem cells.

They arrived eight years ago tomorrow.