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.

Sunday, November 25, 2018

Whining, dining, and giving thanks

In the summer, my Labrador retriever, Maddie, came up to my room to sleep in the air conditioning, but now she likes to sleep on the couch. In the morning she comes upstairs to wake me up and lies down on her hand-me-down LL Bean bed. She does the perfect downward dog. I gave her one of the quilts that co-workers had signed for me. It was after my relapse and was a smaller version of the large one that I took with me everywhere for a long time. She likes to rest her head on it.

I usually get down on the floor for a stretch and a hug and some mutually beneficial endorphins. She had a long puppyhood. I used to complain about her, but now I can't imagine life without her. She is almost twelve, and I can get all verklempt about her age, but I try to change the channel. On Thanksgiving, I told her I was thankful for her.

Having Joe and Katie home filled the house with warmth. It seems like only yesterday that they were fighting over the school bus. Specifically, over whether Katie could get downstairs fast enough for him to give her a ride, with Joe saying he was going to leave without her and me chiming in that she better hurry. (Actually, yelling up the stairs.) This probably did not help to de-escalate. If she missed the ride and the bus, I would have to drive her and wouldn't have enough time to run before work.

Now when I talk about running, I refer to my "so-called" run, because I'm so slow. Due to my neuropathy, I feel like I have lead boots on my feet. So when I went out for a Thanksgiving day jog of a little under three miles, I was glad that it was so cold – 15 degrees – that I couldn't feel my feet.

I tried some CBD oil but it hasn't worked well. A woman at the Brattleboro Farmers Market sold it to me. I ran into a "CBD Oil Users" group on Facebook, and when I put some photos up, they said it didn't have much CBD in it. Who knew?

 People have offered some good suggestions, such as how to buy samples from various manufacturers so you can see if it works before you buy more. There is another group, "Our Neuropathy Friends," consisting of people who are REALLY suffering and searching for relief.

That said, I'm not in shape, but I'm going to do the Hot Chocolate Run . It's for a good cause and crazy colorful and a lot of fun. 

After my little run on Thursday, I had just enough time to enjoy a breakfast that Joe made and then get ready to go to New Canaan for Thanksgiving. I got a kick out of telling people that I was going to Granny's. She's my daughter-in-law's grandmother, who graciously agreed to host us. 

Nell went around the table asking everyone what they were grateful for.

As soon as a person said they were grateful for her, she was on to the next person.

Maybe it was after my turn, but I think I got in that I was grateful for my family, and for being with extended family. The sun came out and I said I was thankful for that.  I would have said that I'm thankful for my bone marrow donor but it seemed out of place.

I wrote her a Thanksgiving thank you when I got home. 

Without her, I wouldn't be able to kvetch that my feet are killing me and lament that I only ran about three miles. 

As I wrote in my last post, it's good to have some perspective and remember when I couldn't even get out of bed. 

Sunday, November 18, 2018

When it comes to tennis, perspective would help

How I sometimes feel after a missed shot
I posed this question to the pro at The Ludlow Tennis Club today: "Should I stop (USTA) league play and only play for fun?"

He said that all tennis is fun, and he wondered why I was differentiating.

I said I used to not mind the pressure of league play but in recent years I have felt it more, and so that has made it less fun.

Well, to be honest, I like it fine when I win. When I play for "fun" and the score isn't entered into a computer, as long as I play well, I don't care too much about winning or losing.

But if I lose in a league match, I get all verklempt.

The good news is that it never lasts long and is gone after the next time I play.

I don't know why I'm especially into Yiddish today. When writing something else, I wanted to make sure I had the right spelling and definition for tsuris – grief or strife – and I ended up finding something useful in Moment Magazine.

It was this comment, well, actually a quote, in response to the essay about tsuris, which can also mean worries, stress, or hassle:

Ibergekumene tsores iz gut tsu dertseylin.
(Troubles overcome make good stories to tell).
-Yiddish Proverb that appears at the beginning of Primo Levi’s book, “The Periodic Table”

Seen this way, troubles can be a gold mine. I've certainly had my share.

The reason I was kvetching to Edsel (the pro) was that a tiebreaker in a doubles match did not end up the way I wanted it to go.

Also my rating went down this year.

Edsel said, "Who cares about your rating? What does the score matter? Did you have fun while you were playing?"

He told me that he remembered when I had just come back and was so weak that I could barely pick up a racquet.

I said that it was nine years ago and I sometimes lose perspective. He said, not in so many words, that maybe I should get it back.

I couldn't remember if I had shown him my story in about how tennis helped me recover from leukemia. He said he hadn't seen it. We went over to the computer and looked it up. Through Edsel's reminder and glancing at my story, I began to feel a little more of that perspective thing.

Players from different teams were sitting around eating and talking. The home team from our group had brought fruit and yummy baked snacks. There were some fabulous fudge brownies. Also strawberries dipped in chocolate.

After a while I walked across the room to the table where two other teams were sitting. I said I had had a lot of carbs and wondered if I could have some of their protein. I know most of them so it came out as less strange than it sounds. They graciously shared: cheese and crackers, peanuts, veggie/chicken white pizza, and, for my second dessert, chocolate chip cookies and corn muffins. We talked about a lot of things. I kept saying goodbye and then sitting down. It was too pleasant to leave.

I told someone I couldn't stop eating. She said I should eat all I wanted; she remembered when I barely had any appetite at all, and this was much better.

I told Edsel I would miss this if I stopped playing league tennis.

He said that if I wanted, I could just come and eat the food and watch other people play.

Knowing me, I'd get shpilkes if I did that.

Friday, November 16, 2018

A little bit of PTSD can go a long way

Illustration from
I'm trying not to duplicate what I write in the blog and what I write for the skin cancer and blood cancer platforms of Health Union. So, I probably didn't share on the blog how I had cryosurgery that made me cry.  If you go to the link you can read all about it. Or not.

I got the biggest blisters on my hands and on the top of my nose. Good thing it wasn't date night. I knew I shouldn't have done it but I popped a few of them. They were ballooning and just asking for it. I left one alone. Guess what? The one that I left alone healed faster. I also wrote one about the problem of skin picking.

The other night I had a nightmare that conjoined some of my trauma and anxiety. Also I realized that something from the news had seeped in.

I dreamt that I was in a bed in a hospital room where relatives were sitting. My doctor said he was going to stick a needle in me and do a major procedure. I would go under. If I came out on the other side, I would be healed. But I might not make it through the night. He said someone should stay with me all night. But then my bed was in the hall and I didn't know where people would sit. Analysis: Stem cell transplant, coma, touch-and-go night when they really weren't sure I would make it. And the thing about the bed in the hall: those melodramatic ads against Question 1, the nurse-patient limits, which featured patients perishing in the hall because nurses had been pulled off to meet requirements in other places. (It failed.)

In another part of the night, I dreamt I forgot my tennis racquet and had to play with something that had a little handle and a brush at the end. I tried to do it but then realized I couldn't possibly hold onto it. The scene cut to a match. My opponent was bouncing around. She looked pretty good. I said I realized I couldn't play with the racquet. Then I realized mine was in the car. She said to go ahead and get it. I said but then I would be late to the match and she said it was OK, we could start and one-all, and she wasn't good for more than one set anyway.

I ran out to get my racquet but then realized my keys were locked in a room. Then I couldn't remember exactly where the room was. Oy.

I was still in transit when I woke up. I guess the good news was that my opponent was being nice about it.

I also wrote a piece about PTSD but it hasn't been published yet. When I did a little research, I found a story that stated many cancer survivors suffer from PTSD.

The National Cancer Institute calls it Post Traumatic Stress, or PTS. Apparently it is not as severe but it can rear its head at any time. Such as in nightmares that go back to the time of crisis.

After that nightmare I woke up feeling blue. I don't know why the saying is "feeling blue." Blue is one of my favorite colors. It should be "feeling gray."

In any case there was nothing much to do about it except to go on with my day.

Wednesday, November 7, 2018

Along the Charles River, belated 'birthday bash'

View from the path along the Charles
A gazillion years ago when my friends from the newspaper and I were locked out of the Forest Park clay courts before our early morning tennis game, we would shimmy through the gap in the fence. Sometimes we had eight or even more, and one at a time we'd get in.

I thought of this Sunday after Katryn and I lay down on the cement and shimmied, belly down, under the gap in the fence on a walkway along the Cambridge side of the Charles River so we could cross the bridge to get to the Boston side, where we had started. We couldn't see an opening and didn't see any other recourse other than wandering around looking.

Just like when our newspaper group had gotten through to the courts, it was a triumphant feeling. Of course when we had gotten onto the tennis court, I was standing up, while the other day I was belly down when I got through. Katryn cheered me on. I rolled over and got onto my hands and knees. She offered me a hand. But I had to get up myself. I did it the usual clunky way. Kind of like how I take the third option when the yoga instructor says to get from the back to the front of the mat by hopping, jumping or getting there any way that you can.

We had walked almost four miles by the end of our joint birthday celebration. We started and ended on Charles Street. My mother always loved it there. It is at the base of Beacon Hill and very chi-chi. We went to a gallery to look at a painting and came out with postcards, which were free and the only thing we could afford. We ended up at a Starbucks (there are two), and I got a red eye for the ride home.

Years ago, we started getting together on our actual birthdays, the last week of August, but it has gotten pushed back from year to year. When we can't do it in August, we say we're going to do it before the snow falls. I think this was the latest we ever did it. I drove back in the dark but it was worth it to see my college friend. Actually the better way to say it is "friend from college" just like I would say "friend from tennis" instead of "tennis friend" when I'm talking about certain people because they become more than a person defined by a place or thing.

Katryn lives in the Portland, Maine, area. So Boston is almost a half-way point. I think this is the third year we met at Panificio Bistro on Charles Street for lunch and then walked on the path around the Charles. It's where I used to run when I lived in Brookline. If you don't mind a little exhaust, it's a beautiful place for a run.

We didn't take a photo or use a hashtag but yes, we were still there. I found a photo from Aug. 21, 2016, and we look pretty much the same. That time we got it on our birthday week.

We've done some fun and interesting things. Sometimes we're inside, sometimes out. We've gone to the beach and to museums.

One year we visited the Isabella Stewart Gardner Museum, where we had lunch and walked around. It is the site of the largest art theft in the world.  Empty frames show mark the spots where the stolen paintings would have been. If you follow the link to the museum website, you can take a virtual tour of the stolen artwork. If you have information leading to the thieves, you can get a $10 million reward.

For our 60th birthday, we went on a tall ship sailing cruise in Boston Harbor, where we got to help hoist the sails. The year we went to the Peabody Essex Museum in Salem on Halloween weekend probably wasn't such a good idea. We somehow forgot about Salem and witches. The place was so mobbed, we thought we might never get out of there.

Many years ago the whole family came here. Somewhere I have one of those now-embarrassing photos of one of her children in a bathtub with one of mine. Naturally I wouldn't publish it.

Way before families, we biked around Nova Scotia. We had a wonderful time except for getting sick on the ferry ride back. The only ones who weren't sick, if I remember correctly, were two little old ladies who had taken their dramamine. Ha, well, they seemed old but maybe they were the same age as we are now.

Basically it doesn't matter where we are, because we have such good time laughing and talking.

Wednesday, October 31, 2018

In a funk after flu shot, and trying to run through it

On Monday I went to CVS and got a flu shot. I figured that by the time I made a doctors' appointment, I might get the flu.

Since I've been poked and prodded countless times, you'd think that I'd be tough. I didn't get hysterical or anything. But I did get a little whiny. I said it hurt.

"Well,  it should, I just put a hole in your arm," the nurse said.

I asked the usual question – would I get sick – and she said that since it is a dead virus, I would not.

Since I like to do things differently, yesterday I felt sick. And my arm hurt. Waaaaaa.

I had promised Maddie a walk. We went to the bank. She lay down on the floor and made herself comfortable. The teller came around and gave her a dog biscuit. My ATM card was not working, so I went to her cubicle and sat down while she made me a new one. Maddie came over and sat with me. I looked at the photo of the teller's dog. It was a Shih Tzu.

I told her about the time when I brought my dog Simon to live in Greenfield at my Aunt Marge's house while I looked for a place to stay. I had gotten my first real newspaper job, at the Transcript-Telegram in nearby Holyoke, before I graduated from Boston University's journalism master's program. (Thank you Jon Klarfeld.)

Simon was possessive about his food. The little dog came over to investigate. Simon snapped. And, unintentionally but still not a pretty picture, broke the little dog's jaw. I felt terrible, of course, but luckily the dog was OK. It's a good thing that everyone loved Simon. I got to stay until I got an apartment in Florence.

Ah, memories.

In any case, yesterday, still not feeling great, I walked Maddie around the lake. When I came back, I looked out the door and thought about how in the way-back-past, if I felt slightly under the weather I could get rid of it by going out for a run.

I wanted to be able to do that. My legs felt heavy, and a stood for a while, looking out the window. I put my leg up on the counter and stretched. (Actually, I my hand ASSISTED my leg in getting up onto the counter. ) It could have gone either way. But I went out for the so-called run, back to the lake, which is about a mile around.

My run was about the same speed as my walk. I bumped into a friend and walked a little way with her. I said that if I wanted to get back to the point where a run was a cure-all, I would have to push through the first part, which was always the hard part. I've done it a few times but not consistently enough. Tennis is easier.

Thinking about this, I wondered, enough for what?

Not enough to get the runner's high, but enough to be a lot more than back after my last transplant when I couldn't even turn myself over or get out of bed.

A little perspective helps.

In any case, my phone said that by the end of the day, between getting to the bank, to and from the lake, and around it twice, I had done, or rather trudged, five miles.

I almost called it quits but I went to Northampton to Megan's yin yoga. It is a hassle to get there and not the best time for me – 6 p.m. – but it always calms me down.

Saturday, October 27, 2018

That infiltrated feeling isn't a good one


in-fil-treyt, in-fil-treyt

verb (used with object), in·fil·trat·ed, in·fil·trat·ing.
to filter into or through; permeate.
to cause to pass in by filtering.
to move into (an organization, country, territory, or the like) surreptitiously and gradually, especially with hostile intent.

In nursing, it has a specific meaning.

Infiltration occurs when I.V. fluid or medications leak into the surrounding tissue. Infiltration can be caused by improper placement or dislodgment of the catheter. Patient movement can cause the catheter to slip out or through the blood vessel lumen.

I present these definitions because on Wednesday at ECP, the light therapy on my blood, the needle in my right hand infiltrated. This has happened before. It is not the end of the world. But when it happens, it is painful. I usually know it the minute the needle goes in. It doesn't feel right.

Surveying the damage
Nancy, my nurse, put the large needle in my left arm, for the draw. (Drawing out my blood so that the white blood cells can be separated and treated with UVA light.) Rosalie, a nurse who had a different patient, came over to help with the return needle, the smaller one. She patted my arm and my hand vigorously to get a good vein. Actually it felt kind of like slapping. She put the needle in and went back to her patient.

I told my nurse that it hurt. She took one look and said it was infiltrated. She pulled it out. There was some extra blood. She had to bandage it up before she put the needle in a different spot. My right arm was unhappy.

Meanwhile, my left arm wasn't doing so great either. My hand had a bad case of pins and needles. You can't move your arm, so you can't shake it out. The needle in the crook of my created a dull ache.

For a while I was taking a little oxycodone before, because I had had a few bad instances of severe pain when the needle felt like it hit a nerve. I haven't even been bringing it for a while. But with both arms hurting, I said maybe I would in the future. (Tylenol doesn't do it. I can get oxycodone at ECP, but it's a major production, and Melissa had said to bring my own.)

A nice resident, new on the rotation, came over to talk. I gave him a brief history of my two-plus years at ECP, going back to when I asked my doctor why my abdomen felt like it had a bowling ball in it, and why there were ripples in my thighs, and he said it was graft vs. host disease of the skin.

He thanked me for the info. I should get a teaching fee! Then I fell asleep. When I woke up, it was almost time to leave. I wasn't sure how I slept through being that uncomfortable, but maybe it was a defense mechanism or something.

Wednesday, October 24, 2018

Insensitive email triggers total meltdown

Melissa, me, and Dr. Marty
So this happened.

I had a checkup scheduled for today, with Melissa, at 2 p.m. before the light therapy on my blood. It was a shorter interval than usual – four weeks – but we made it for that because I had several ongoing matters to discuss.

Then I realized I had too much to do work to do this week. I emailed Melissa with a copy to Nicole, the (relatively) new scheduler, and I asked if we could move it back two weeks.

She wrote back,

"I am happy to move your labs and appointment to 11/7. Unfortunately, Melissa will be transitioning to a different department so you will see a different nurse practitioner.

Please let me know what will work for you.

This triggered an automatic meltdown.

If you've read this blog for even a little while, you know how attached I am to my nurse practitioner. She's seen me through ups and downs for more than 10 years.

For International Women's Day, when Healthline asked me to pick a woman to honor in their "day without her" feature by picking a woman it would be hard to live without, I wrote,

“My nurse practitioner, because she knows how much I go through and calms me down when I get nervous, always saying the right thing. She helps me coordinate my many doctors’ appointments, answers emails even on a weekend when she is busy with her husband and two young sons, cares as much about my mental health as my physical health, and most of all has become a true friend.”

Back to the meltdown.

I don't know why this happens, but often when I get very upset I knock something over. It happened the day Joe moved out, when I was crying so much, and not paying attention to the space around me, that I knocked over a glass of Gatorade...right onto my MacBook Air. I had to get the insides replaced. It was a costly mistake.

Yesterday I was sitting at my kitchen table, where you can often find me typing away, looking out onto the patio and the so-called garden, when I read the email.

I started crying. And knocked over a glass of water. It spilled all over the kitchen table, soaking pads and papers. It just missed my computer, though. I mopped it up. I texted Melissa, "Can you call me?" I don't know which she saw first, that, or the page that I sent.

Due to the tears, I could barely answer.

She said, "What's wrong?"

I said quickly, "It's not my health," because what with all my mishaps, that would be the first thing a person would expect.

I told her about the email.

She said she hadn't seen it, she was sorry about the way it happened, and she had wanted to talk to me in person. I said I would go in a little early today so we can talk in person. I mentioned that it hit me especially hard due to what happened with Mary Lou. That was shorthand for the clumsy way Dana-Farber/Brigham and Women's decided that I could no longer see my longtime social worker because she would be in-patient and the other social worker would be outpatient.

First Mary Lou had said she could stick with longterm patients. Then they told her that it wasn't the case. She wasn't even supposed to respond to my emails...a total cut-off of a vital support person. My sister and I talked to the social work department heads. They said, not in these words, to suck it up.

Mary Lou said that if I went over to the sixth floor at the hospital (my old home away from home), she could meet me in a conference room from time to time. We did that for a while. It was good to see her, but it felt like we were sneaking around. At this point she seems to have disappeared. I asked some people if she retired, and they said they didn't know.

Meanwhile the social worker who I was supposed to see, who I didn't want to see because we weren't a good fit, saw me a couple of times and then disappeared. I got a new social worker with no background in oncology. The questions she asked me sounded like she hadn't read my file. I said I didn't want to see her again.

People move around. We always felt the world would end when we lost a tennis coach. But how you take it has a lot to do with the way you learn about it.

I feel guilty griping about the place that saved my life, but hey, we transplant recipients are "babies" with sensitive skin.

Actually I don't think you even need to be super sensitive to be thrown for a loop by an email like the one that I received, about Melissa.

I believe that the two more experienced schedulers before Nicole wouldn't have done that. I think they would have checked in with Melissa and asked how to handle it.

As I wrote in this post for Health Union, how things are said determines how they are received. This sounds like a truism but still it doesn't always work out that people present sensitive topics in the best way.

I sometimes regret it when I dash out an email, but I don't regret that I wrote back, "Not ok to find this out by email."

To be continued, after my visit today.

Sunday, October 21, 2018

Three cheers for fake teeth and longterm friendship

Hiding behind chocolate mold
News flash: For the first time in as long as I can remember, I am able to chew on both sides of my mouth.

It was a big day when Dr. Badri Debian, of Holyoke Dental Associates, gave me my newest bridge a couple of weeks ago. For a while he had said I didn't need it because I still had enough teeth on my upper right to be able to chew on that side. It didn't seem so to me. I chewed so much on my left side that I wore down the bottom teeth and needed a bridge. But when I lost my thirteenth tooth last month on my right upper, he decided it was time.

I never knew that I would be spending so much time thinking about teeth, or lack thereof.

Friends asked how the bridge was glued in. I have a tooth in front, but not in back. For some reason this sounded funny, and we started cracking up.

So it turns out that I don't have a traditional bridge, which would be a fake tooth connected to two existing teeth.

A bridge supported by a tooth on one side is a Cantilever bridge, and that is what I have.

Here is another word that is new to me: a pontic. That is the technical term, or euphemism, for a fake tooth.  

I keep forgetting that I can use my right side now, so I still favor my left. It's not perfect, because I'm missing a bottom molar, so I don't have a great connection. 

Dr. Debian has my back. He gives me a good discount and is in my opinion, a mensch. But since I don't have dental insurance because dental insurance stinks for people in my situation, it might be good for the bite in my mouth but it takes a bite out of my bank account.
Anne with cacao pod

I'm behind on other news. My Vassar classmate Anne Outwater and I had an interesting visit to Taza Chocolate Factory, in Somerville. It was a busy couple of days. 

I crammed a lot in on that Wednesday, but when a friend (Anne) who lives in Tanzania says she is going to be in Boston and would like to visit a chocolate factory run by a fellow Vassar graduate, and it is the same day that you need to be at Dana-Farber at 4, and you have already promised to sub in a tennis group at 9 in the morning, what are you going to do except try to do it all?

Somehow it worked out. Getting there was crazy, though. As I neared my destination, I was thwarted by blocked-off streets. 

I later learned that it was because of the large public transit expansion affecting Union Square in Somerville. An employee from the chocolate factory talked me in. I almost gave up. But I got there on time for a little introduction and tour that included tasting a lot of stone ground dark chocolate of various textures and tastes. We learned that the higher the cacao levels, the more health benefits there are. Unfortunately I like milk chocolate better. But I'm learning to like dark chocolate.

I took a selfie with Anne but erased it because I had a big red mark on my nose, resulting from a zapping, or cryosurgery, on a precancerous spot. I conveniently displayed a mold by holding it over my nose. 

Afterwards we got in my car and went to Dana-Farber so she could sit with me while I got my blood treated. It was the only other time we would have together. Quite the difference from when we rode bikes around Prince Edward Island together and she placed a blue shield around us so that the dogs would not get us. 

Anne does not drive in Tanzania. I think I should have told her to close her eyes on the drive through Boston traffic. 

Anne has a Ph.D. in nursing and has an impressive job and title: Head of Department of Community Health Nursing at Muhimbili University of Health and Allied Sciences in Dar es Salaam, Tanzania. Before that, she was a medical officer in the peace corps. The nurses were impressed with her! She was also impressed by the nurses and interested in what they were doing. She got a quick lesson in ECP, or extracorporeal photopheresis for graft vs. host of the skin.

My compadres Larry and Lisa were also there. The three of us always come at 4 p.m. every other Wednesday. I don't know the name of the other man who is always there. Sometimes he is behind a screen. Due to traffic, we got there last, but I finished before Larry and Lisa, because they each use just one arm. I told Anne how it came about that I use two arms, one for drawing and the other for simultaneously returning. It was because one day Mark, my nurse for the day, came up and asked if I wanted to use two arms, and before I had a chance to balk, he put the second needle in.

Depending on where the nurse places the needle, I can sometimes use my right arm. But it was at an awkward place, so I couldn't. It was good that Anne was there to talk to. She was impressed with the nurses. When the procedure was finished, Mark walked Anne out to show her where to get the T. 

It was also a good thing I was going to Margaret and Nick's, because I was too tired to drive home.

My construction obstacles persisted, though. I have been to their house many times but got confused when getting off at the exit that I usually take off Route 128/95.  It looked different. I ended up where I didn't want to be and then had to circle around.

Margaret said the changes were due to something called the Add a Lane project. I was glad to hear I wasn't making it up and there was a reason for my confusion.

I had hoped that one of the doctors at ECP could remove the stitches from the Mohs surgery on a squamous cell cancer on my right temple. A doctor came over prepared to do it, but when he saw that it was running stitches, he said he couldn't; you need finer scissors and a better light. He asked Melissa to call ahead to the Faulkner Hospital Mohs Surgery Center to see if they could take me the next morning. He called it the Pregame. He said, in the meantime, to just go in the morning and assume they would see me. She texted me to ask if I could get there at 10:45. I was already on my way. Yay team!

The next day I drove home in the pouring rain. I went straight to a hair appointment that I had in Northampton. I don't have any construction-related explanations for getting there at the wrong time, 3 instead of 2. Getting out of my car, I couldn't open my umbrella. Getting soaked, I fumbled for my credit card to use in the meter. I dropped the card in the rain. I couldn't find it anywhere, so I thought maybe it was in my car. But I canceled the card anyway. This is a pain because a lot of things are attached to it.

The next day, I got a call from a man who said he found my card. He said he looked me up and found me via my website. He said he wanted me to know that he was a veteran and he wouldn't have tried to use the card. I thanked him profusely and said I had already canceled it. But it was nice to know that such a person existed.

Meanwhile, someone had gotten a hold of the number for my LL Bean card and put more than $2,000 in fake charges on it. The credit card company didn't catch it. I believe they should have. After I called, they removed all but one small charge. I told them it was also a fake charge. They said no problem, they would not charge me interest while they looked into it. They charged me interest and a late fee. I called and said to take it off. They said they would take it off and look into why there was a stray $58 charge on it...with interest. I said OK.

When I tried to use the card, it was rejected. I called to try to find out why. Of course as most people know, it is bad for your health to try to get through to a real person at a credit card company. You cannot just press zero. I yelled into the phone, agent, agent, agent. When I finally got a person, they said it was locked because I hadn't paid them the $58 even though it was in dispute.

They don't care, but I said that as soon it is resolved and I use my coupons, I'm going to cancel the card.

Sorry for the rant.

Tuesday, October 9, 2018

Canvassing in NY to help take back the house, stuck in the car with a pill

Better days: In Keene, with Connie Britton, fall, 2016
In my desire to do something about the disaster in the White House, a while ago I got interested in Swing Left.  From the website: "Swing Districts are places where the winner of the last House of Representatives election was determined by a thin margin. Swing Left helps you find and commit to supporting progressives in your closest Swing District so that you can help ensure we take back the House in 2018."

It is pretty nifty. You can put in your zip code and find the swing district nearest you and then you find out what to do to either keep it Democratic or flip a Republican seat. Every week I get emails with links to either drive or carpool to our swing districts, New York's 19th Congressional District and New Hampshire's 2nd.

I dragged my feet but finally did Sunday. Since I had already been to New Hampshire's second in 2016, I decided to go to New York to canvas for Democrat Antonio Delgado. The Republicans are running a racially charged attack against this (black) Rhodes scholar for some lyrics he used during a brief career as a rap artist. According to this story in the New York Times, "The video ads have injected elements of race and identity in a contest already fraught with national implications: The race between Mr. Delgado and the Republican incumbent, Representative John Faso, is thought to be a tossup, so both parties are heavily invested in the district, which covers much of the Hudson Valley and Catskills regions."

Some of us met at 10 a.m. at Sheldon Field in Northampton. I drove with Robert Freedman, whose organizing efforts were featured in this Gazette story. We go way back; I interviewed him about a play he directed in 1991. We know a lot of the same people and had plenty to talk about. The drive over, with another volunteer, was a quick hour and 45 minutes to Hudson, N.Y. At the appointed time, noon, volunteers from the area and further away crowded into a cramped office. It is all done by app now, unlike when I went to New Hampshire in 2016 and we got clipboards with addresses where we were supposed to go. A crush of people descended on the one coordinator who was giving out location codes to put in the app. Somebody said they probably were not expecting so many people. Perhaps the Kavanaugh disaster had gotten them out.

In New Hampshire, they had separated experienced canvassers from new ones. Since I hadn't done it with the new system, I said I was new. A woman said she would go with me. The coordinator started giving an explanation of how to use the app, but when I lingered to hear it and to check in with Robert and tell him I was taking off, she walked towards the door and gave me a dirty look.

As soon as we got in her Volvo, the problems began. I've written about crazy drivers to and from Boston, and now I'm about to write about another type of crazy. I seriously don't know what was wrong with this woman. I looked at my phone screen and saw the addresses. Then I asked her what to do next. She said they were explaining all this back in the office. But she had wanted to leave!

She has a summer home in Stockbridge and lives in the 60s on the west side of New York. Perhaps she is a generally snooty person.

In any case, you swipe to the next screen and get the names, ages, and their party, and then to the next to say if you were able to connect with them.

Not too far into the farmland, we lost service, meaning we couldn't get directions to the houses. I had said earlier I thought it was easier with paper, but she had she didn't think so. Right around when we had to stop at an apple farm to ask for directions, she might have changed her mind. I can't even begin to get into the various times she snapped at me or ordered me around. She has been working on this campaign since April, so maybe she was annoyed about the carpetbaggers.

I opened the window to let in the fresh country air, and she said to close it because she had the AC on.

A highlight was getting some apples that were so crisp and tasty, they must have come right off the tree. A couple of times I commented on how beautiful the area was, but she didn't answer.

Very few people were home. I only talked to one person. It was from my driver's list, so she showed me the name on her phone. She asked me to walk to the house while she sat in the car, and I said OK. She wanted me to take her phone so I would remember the name, but I said I didn't need it.

A woman who looked like she was 40-something came to the door. She had a Bernie sticker on her car. That was encouraging. I said that Delgado was a good candidate who cared about issues important to people like us, and that although most of us don't vote in the midterms, this was an important time to do it if we want to gain back some control. She took the literature, thanked me, and said she would consider it. Maybe I got one voter.

When I got back to the car, my canvassing partner said, "Where's my phone?"

I said, "I didn't take it." She said, "Yes you did!"

I said I would call her. The phone rang from between the seats.

She said she was sorry.

About that time, Robert called, looking for me.

I told my driver that we had to head back soon. She said it was only 3:15, and we were supposed to go to four.

I took out the invite. It said, noon to 3.

She drove me back to the office and said she would finish the last few by herself.

I thanked her for driving, she headed back out, and then I got in the car driven by Robert to go back to Sheldon Field.

They had at least had conversations with six or so people who said they would probably vote for Delgado. I told them about my bad experience and showed them a photo from the day that Connie Britton had come to the Keene Democratic Committee's office to get us pumped up to go out and canvas for Clinton.

I thought of the spread they had given us in Keene and the hopes that we had for the election. In the car, we discussed the idiots we remembered saying at the time that they were considering "the lesser of two evils" between Trump and Clinton.

We had been tasked with getting out the vote for the whole Democratic ticket. It included Maggie Hassan for senator, so at least we got that. We had also given out literature for Annie Kuster for representative in New Hampshire's 2nd District. She also won, and she is the other candidate that Swing Left is helping.

By the time I got home, it was dark.

I was hungry. I had a peanut butter sandwich around 11, but only two apples and a donut afterwards. I pulled out a leftover cooked chicken and gnawed on a drumstick. Not a pretty picture.

I texted my friends that I didn't think it was a good use of time...but I felt like I should be doing something. I still have the opportunity to give New Hampshire a try. Maybe I will, maybe I won't.

I had felt so cooped up in the car that I needed to get some exercise. I put on a light colored T-shirt some running pants and went out into the balmy night. I ran on the well-lit paths around Mount Holyoke and on the parts of the street and sidewalk that weren't dark.

With stitches still in my head and stitches recently removed from my leg, I thought it would not be a good idea to fall. I went for about three miles. For most of it I went slowly, but I sped up between some markers to get some of the bad energy out.