Monday, December 31, 2018

Weddings and travel and parties, oh my

Cousins at Tibetan wedding ceremony with Karma and Jeremy, center
At first I couldn't understand the invitation:

“Jeremy and Karma's Wedding Weekend” 
Saturday, December 22nd at 2:00 PM to
Sunday, December 23rd at 3:00 PM

The address: 

Walker Creek Ranch 
1700 Marshall Petaluma Rd, Petaluma, CA

So the wedding of my cousin Nancy's son Jeremy was going to last for a whole weekend?

On looking more closely, I saw that there would be an American ceremony on Saturday, Dec. 22 at 2 p.m., followed by a reception at 5, with Dinner, Dancing and a Drum Circle at the fire pit.

On Sunday, Dec. 23, there would be a Tibetan ceremony at 11 a.m., proceeded by breakfast and followed by a celebration brunch.

There was no doubt about it, I was going to go. My beau said he would go with me.

Tibetan and American ceremonies
I got an Airbnb on Stinson Beach, just a few steps from the Pacific Ocean, for three nights before the wedding. Nancy met us for a lunch and a dinner before the wedding. It was special to have that time alone with her. We walked on the beach and took an amazing walk in Muir Woods, climbing to the top of a peak, away from the maddening crowds. For the overnight at the ranch, Nancy reserved a lodge for a bunch of us. In between events, we sat around and talked. It was cozy and fun.

It was great spending time with West Coast cousins that I don't see enough. We miss having Serena on the East Coast but it is so good to see her happy with her sweet baby Goldie, who is cute in photos but even more adorable in person.

During the American ceremony, the bride and bridegroom's dogs watched from inside a dog stroller. One wore a dress and the other, a tuxedo.

I missed Raining Jane on their East Coast tour, so I was glad a got a chance to hear them play at the reception.

The Tibetan ceremony was a condensed version of a lengthy ritual.  Family played a role in laying silk scarves around the wedding party. They wore beautiful silk garments made especially for them. We did a circle dance that reminded me of the hora. There was enough love to go around for two ceremonies.

Also, lots of good food!

The rain held off until our departure day.

Three hours time difference doesn't require much of an adjustment, but that, combined with all the running around, left me feeling kind of tired.

I had two kids home, which perked me up.

Then the other night, Maddie had a seizure. It was incredibly scary. Her jaw and muscles were clenched, and she fell off her spot on the couch onto the floor. Her legs were twitching like crazy, and she was frothing at the mouth. It seemed longer than it probably was. She stopped and got up and started walking around. You could tell she was agitated but basically OK.

Muir Woods and me
Katie and I took her to the emergency vet in Deerfield. Blood work, blood pressure and a few hundred dollars later, she turned out to be OK. The vet said she "allows" a dog to have one seizure without taking any action. If she has more, we don't need to take her to the vet, but we do need to keep track, and then medication might be in her future.

It was a 2 a.m. morning.

This past weekend, two more parties.

One, the always fabulous holiday party at tennis friends Karan and Marianne's house in Springfield. Last night, a Team Fred appreciation pizza party at Joan's house in Florence. Still Fred's, though. 

It was bad timing to be talking to a woman about our dogs because when I told her Maddie's age (12) , she said, "You're living on borrowed time."

I knew her comment reflected her own attachment to her dogs, but it hit me the wrong way. You wouldn't say that about a person's elderly parents. It fed into some of my morbid tendencies. 

Waiting for a crumb at deli
She said she usually has a backup dog to mitigate the pain. I've often thought of getting an extra. But I'm a one-dog parent. I've been attached to all of them but I think I'm especially attached to Maddie because it's often just the two of us. Here is a link to a story I wrote about our bond.

This morning I gave her an extra enthusiastic compliment on her down dog and gave her an extra big hug to start the day. 

I know the drill. Focus on the present. Take a walk. If you worry about the future you're going to miss the present. I have known some old labs. And so on and so forth. Sometimes easier said than done.

Sunday, December 16, 2018

10 years ago, it was downhill all the way

Callen and Nell

I haven't been running that much, but yesterday I decided to see how I did with some hills, back and forth to Brunelles Marina. The early registration email from the Saint Patrick's Race committee got me thinking.

A man walking down the road was going faster than I was running. If I were to do it again and didn't want to finish last, I would have to try to figure out how to get a little faster. First of course I'd have to see how I felt going a longer distance. The neuropathy in my feet is not a big help.

When I checked at home, I saw that I had gone 3.8 miles. Then I drank coffee and walked Maddie, for a total of the 6.2 miles, the same distance as the race. Doing it broken up with coffee in between, and a dog walk at the end, would be the way to go.

I thought about how it's coming up on the 10th anniversary of my second relapse of acute myeloid leukemia. Back home, I looked it up in my handy reference, my own blog.

In hindsight I know what was happening. Looking back, I can still feel the grip of uncertainty and panic. Here are some excerpts. Maybe you want more, maybe you don't. If you want the whole post, you can click on the link. For reference, the CMV to which I refer is Cytomegalovirus. It is not dangerous to most people, but it is to people with compromised immune systems like I had.

Dec. 12, 2008, Transfusions and rashes and shakes. I survived the long day at the clinic, but it wasn’t easy. My white count was down to .9 (normal is 3.8-9.2) and my hematocrit was down to 21 (normal is 34.8-43.6). I wondered how I had been able to walk the dog nearly two miles the day before. I guess I was running on reserve power. I needed a platelet transfusion in addition to needing blood; I figured if my platelets were that low, I didn’t really need to know the number, because it would only spook me. This being the third downward spiral after a combination of CMV and Valcyte, the drug used to treat it, they switched me from the Valcyte to a different drug, Valtrex, which looks like a horse pill and needs to be taken four times a day. They said this drug should hold down the CMV but not mess up my counts.

Dec. 16, 2008, Spending some uneasy time in limbo. My counts were still low yesterday: WBC was 1, hematocrit was 24, and platelets were down at the “don’t ask, don’t tell level.” I know I could ask, but for some reason I get especially rattled by low platelet levels. I got platelet and blood transfusions, with 50 mg. of Benadryl and a steroid to stave off a platelet reaction, and ended up staying the night at Diane and David’s, this time being rescued by David because Diane was out of town. It also appears that on top of the already low white count, I may have a virus that is further suppressing my counts. I've had an on-and-off low-grade fever, but I feel OK. Yesterday they sent out some blood samples. So the primary suspect is the CMV, the Valcyte and now a new virus, and when the virus goes away my counts should come back.

Dec. 18, 2008, Biopsied, transfused, and still wondering. The counts were not better today, unless you consider the hematocrit, which was 25 after Monday’s transfusion. This was still below normal but high enough to avoid a transfusion. My white count was .6, which is quite low. I knew my platelets were very low, due to the red pinpoint dots (Petechiae) that were making my legs resemble a pointillist painting. As I’ve said, I really have no interest in knowing my numbers when my platelets are extremely low. Today I found out by accident. I went into the infusion room in search of the lunch cart, and I bumped into my nurse from the other day. I told her that my blood counts weren’t back yet, but that I thought my platelets were still low. “Well, they were only 2 the other day, so I’ll just get the order going,” she said. Two? When they were 164 (normal is 155-410) just a few weeks ago? The chimerism from recent blood work, showing the percentage of donor, is still not back. After I got my platelets today, Melissa did a bone marrow biopsy, which will provide a clearer picture.

Dec. 25, 2008: Downhill all the way. It’s been a terrible week. I felt really sick all weekend, and when I called Dr. Alyea Sunday, he said to go to the Brigham and Women’ emergency room in Boston, from where I would get admitted. He also said he was sorry to tell me on the phone, but the pathology report on the bone marrow biopsy report showed that I had relapsed. I had to get to the hospital in a snowstorm, so I didn’t have time to digest it. I still haven’t digested it. I have been crying a lot, picturing myself at the end of the road. Thinking I won’t see my children finish growing up, won’t see my grandchildren. I guess this is my mind’s way of going through the mourning process; I hope to get to the acceptance phase soon. I wandered over to 6A (my home for the last transplant) from 6C (where I am now). Myra, a wise, funny nurse, who's been doing transplants for ages, knew what had happened. “Well, you have 48 hours to have your pity party, then you have to quit it and put on your fighting gloves,” she said.

I had my pity party, and then I put on my boxing gloves.

Through luck, an amazing team at the Dana-Farber Cancer Institute, the strong stem cells of my donor, a little stubbornness on my part, absence of the challenging FLT3 mutation, and a lot of help from my friends and family, I did get to see my children grow into wonderful young adults and I did get to see those adorable grandchildren.

It's hard to believe that it's 10 years after those challenging days.

Tuesday, December 11, 2018

Three cheers for a driver who wasn't too bad

Last week when I got to Dana-Farber for ECP, aka the light treatment on my blood, I thought my blood pressure would be high because I was drinking a Cumberland Farms coffee with one of their caffeine shots.

Coffee snobs take notice: They have good dark roast coffee. I am one of them and I was surprised.

My blood pressure was actually fine.

“Must have been the driver,” I said to my nurse.

That’s because I was the driver,  and unless you count my internal monologue, there was nothing to upset me.

The drivers in general have been OK lately. More opportunity for calm, less fodder for writing. I’ll take the calm.

I drove myself because there were too many connecting points to trust a ride service to get me there on time.

On Wednesday I had ECP at Dana-Farber. Then dinner and sleepover at Diane and David’s, followed Thursday morning by back-to-back dermatology appointments at a Brigham and Women’s outpost at 850 Boylston Street. Then down to Dana-Farber for an 11 a.m. checkup with Melissa, then to the Cheesecake Factory at the Chestnut Hill Mall for lunch with a good friend. (I would say an OLD friend but that sounds like the friend is aged, whereas he is old as having known him for a long time, since college.)

Dr. Lin, who takes care of the surface of my skin, zapped many small squamous cell cancers on my face, neck, arms and legs. When you hear squamous cell cancer, you think, out, out, damn spot, but they grow slowly and aren’t large enough to need surgical removal. 

She does the cryosurgery with a softer touch than the overzealous Fellow in another office who zapped several areas so hard that I got blisters. (I told her about it and she said that if you overdo it, you leave scars, which is what happened on one of my hands.)

She wants me to apply Efudex, the chemotherapy cream, to these same areas. It agitates the cancers so that they turn red and angry and decide they don’t want to live with you anymore.

I actually just wrote a story, not yet published, about the side effects of Efudex, generic name Fluorouracil. I feel like I have no choice but to use it. The spots are red enough already and I don’t want them to get worse before I go to California next week for a wedding. She said it’s OK to wait.

They were going to make me get dressed and go across the hall to see Dr. Liu, who specializes in subcutaneous dermatology and is in  charge of the treatment for my graft vs. host disease of the skin. (That’s the ECP that I’ve been doing for two years.) But they relented and let her come to me. 

She wants me to continue getting the treatment every other week. It’s making my skin softer, though not less lumpy. Just because it’s fun to add one more thing, she wants me to go to physical therapy to try to increase the flexibility in my hands and wrists. The rest of me has gotten more flexible, but my hands and wrists are getting more tight.

Where “normal” people can put their hands in prayer position and lift their elbows, I can barely lift them at all. And when I try to place them flat on the floor in yoga, one almost makes it but the other is cupped. This is hard on my wrists, and makes a poor foundation for my down dog. Sometimes I use blocks...but that is another story.

She set it up in the Boston area, but when they called, I asked if they thought anyone in Western Massachusetts could do it. The person on the phone said yes, it would be possible, as long as I found someone listed on the website of the Hand Therapy Certification Commission, or

It turns out there are many, including in Amherst, at the Valley Medical Group. 

Another opportunity to ask, who knew?

I don't listen to many audiobooks, but friends recommended Bruce Springsteen reading his autobiography, Born to Run,  and it made the two days of on an off driving much easier. One of the reviewers called it exhilarating, and it definitely was. It took my mind off skin cancer and up tight hands and all that. 

Tuesday, December 4, 2018

Running – or sloshing – in the rain for a good cause

With Amy Willard before the run
According to a post on the the Hot Chocolate Run's Facebook page, it was apparently the first rainy Hot Chocolate Run in the event's 15th year history.

In the morning, a friend pointed out that I didn't have to go. I had already raised the money, after all.

I said, in effect, that if everyone thought that way, nobody would be there. (And think of all that hot chocolate going to waste.)

When I ran the Hartford Half Marathon in the fall of 2002 it was on another rainy day. I felt a little under the weather. I remember my mother telling me not to go. I went anyway. At the time, leukemia might have been brewing. But I felt pretty good, except for feeling silly when my friend Mike and I got there and got soaked while waiting, while the more knowledgeable runners had made makeshift ponchos out of garbage bags that they discarded when the race began.

I didn't feel so good this year. And it was only a 5-K.

Contrary to last year, when I trained for the Hot Chocolate Run so that I would feel OK on the hills, and then wrote about it for Women's Running, I didn't train this year. 

I wasn't even planning on going, but when I told Marianne Winters,  the executive director of Safe Passage, that I wasn't in shape, she said that it didn't matter because the Fun Run, was, well, fun. In the old days I would have signed up for the race with the "real runners," but that was then, and this is now. 

I know Marianne through tennis, and it was over snacks at a tennis match that we had talked about my participating. It was as a way of supporting her great work that I did my first Hot Chocolate Run with other tennis teammates three years ago.

And then there was one.

Amy, from that original group, was running this year. We agreed to meet before. It was fun to go together. She has a great smile that ... cliché alert...brightened the day.

Due to the cold and rain, it was difficult to figure out to wear. I put in contacts that I'm trying out. The idea was to keep from having rain pour onto my glasses. I put on a Gore-tex jacket to keep my top dry, and as for my legs, I figured they would get soaked anyway so I just wore the leggings that I wear to tennis. Then for headgear, the choice was between keeping my head warm with the red hat that you get for raising at least $150, or wearing a baseball hat and keeping the rain out of my eyes. 

Choosing the warm hat may not have been the best idea. The rain was coming down so hard that I was afraid the contacts would wash out of my eyes. Then my vision would be even worse than it was in rain-soaked contacts.

At least as an upgrade from the garbage bags of yore, volunteers had handed out ponchos for us to wear while we waited. 

We also went into a warm tent where trainers from Cooley Dickinson Hospital were rolling out runners' legs with a stick that is a torture device for tight muscles. I got mine done because just on time for the run, my plantar fasciitis decided to act up. This irked me no end. I have a couple of the sticks at home. I guess I should have been torturing my calves for maintenance, but, alas, it's hard to get motivated when there are so many other things to think about. In any case, it helped a little.

As I was going up the hills, I remembered why I had decided to run on some hills before last year's run. I've been doing intermittent three-mile runs but they are mostly flat.

I leaned into the first hill. Then my back cramped, and after a while, I had trouble standing up straight. I thought maybe I should switch to a walk for a while. Other people were doing it. When I tried to switch gears, I wobbled a little. It was easier to run, albeit slowly, that to walk, because it gave me better forward momentum. A woman asked if I needed assistance. I thanked her and said I didn't. We trotted alongside each other for a bit. That took my mind off being uncomfortable...for a few minutes.

By the time the hills at Smith College came, near the end, I was feeling a little bit screwed. I was bent over. I tried to coax myself into standing up straight. I told myself, "Pretend you're walking the dog!" Down the home stretch, I was going slowly enough to have a conversation with two police officers near the Academy of Music. I said I couldn't stand up straight. They asked if I needed help. I said I just wanted sympathy. They laughed.

Obviously I made it. Hot chocolate with marshmallows never tasted so good. I was soaked and cold But so was everyone else. 

I got a new mug. 

If you contributed to my fundraising page, thank you!

I love how the website is set up so you can see where the money goes, for example, a $30 donation can help provide resources, support and hope for a survivor calling the 24-hour hotline; $60 can help support a survivor's first counseling session, and so on.

The event broke records and raised $628,527.

I don't seem to be any worse for the wear except for not being happy about my heel.