Dogs and dog Heaven and a quiet house

Young Maddie at Tailgate

The day that my beloved dog Simon died, my friend Pam, who had gotten Simon with me at a pound near Vassar, was visiting, so it was a bookend. He took his last breath in the back seat of my car after a visit to Dr. Ruder, as in, couldn’t have been ruder, when we took him there after his legs went out from under him in the yard. He was about as old as my big dogs got (11 or 12, until Maddie came along). We had tickets for Tanglewood that night, so we went ahead and went. I sat on the lawn and cried. The next day, still crying, I picked up the phone to hear my mother crying. My Uncle Warren had shot himself. My cousins came. We went to Brattleboro for lunch before a ceremony at the top of a mountain. Then we came back to the house and ate. And I cried some more, for my dog and for my uncle. At some point during those few days, I remember furiously dead-heading snap dragons on my front yard. 

Winnie, the big black Lab, had become as much Jim and Jane’s dog as mine, and they took her when it was time. Misty just fell asleep on the rug near the front door and never woke up. I believe my “baby brother” Sam died at the dog sitter’s. The story goes that at a family gathering, my mother was crying her head off, because he had been her special friend. “What’s wrong?” someone asked. “Sam Gordon died!” someone else said. “Who’s Sam Gordon?” 

“The dog!”

Starting when Maddie turned around 14 or so, she had really slowed down. When I walked her across the street to get to the lake, I was worried that we might get run over. Some people didn’t have the patience for it. (Me to that person: “Then don’t walk the dog with me. I need to do it.”) But the dog people got it. It was worth it to get her to the lake. The years melted off. She was so happy sniffing around. If it was too hot, I walked her after the sun went down. She liked to sit in the ground cover near the door when I watered the plants. She loved walking to the lake with her friends Sue Ellen and Mary Margaret. She liked going “downtown” with her new friend, Rusty. I can’t say that the last year or so wasn’t stressful for me. Coming downstairs to check if she was breathing. The UTIs and in the last month, pneumonia. The dog meds were incredibly expensive, as were the fees for the tests. As I shed pills, she accumulated them.

Favorite toy

She didn’t always greet me at the door like she had done her whole life. But mostly she did. She dissed all her toys except for the long skinny snowman. I sent photos to the kids of her snuggling with it, hooking her paw over it. For some reason, when she turned 14, she started barking. I wrote a story for un upcoming issue of AKC’s Family Dog Magazine about how, with the help of a trainer, I got her to stop.

She was a “difficult child.” I remember writing a blog post, “Does anybody want a dog?” I complained at yoga. Erin, the teacher, said, “You love that dog.” Of course I grew to love her. She helped me recover from cancer. We helped her recover when she was hit by a car, a story that I wrote about for AKC's Family Dog Magazine, which won an award for inspirational feature. 

She wouldn’t stop getting up on the couch, so I put a special blanket in her spot in the corner. Then when she stopped jumping up on the couch, I wished she would do it again. When she couldn’t go upstairs anymore, I got her an extra downstairs bed. First thing in the morning when I came downstairs, I got down on the floor and gave her a body hug. She put her paw over my arm. 

In the past year, as I was weaning off some of my meds, she was adding on. I asked at the vet what happens with a dog like this, and she said that one day, they aren’t able to get up. 

It didn’t happen that way. First, the possible ways that I jinxed it. (Take this with a “grain of salt.”) I hadn’t wanted to put her through going to the groomer, so I hadn’t done it for a while, but her coat had gotten so full of dander that I took her. I kept buying small bags of dog bones because I figured she couldn’t possibly live long enough to go through a big bag. Then I figured that this was silly and got her a big bag. 

She had gone to her home-away-from-home at Jim and Jane’s when we went to Wellfleet for another fun family vacation at Diane and David’s. On Sunday, the day of my return, Jane called and texted to say come back as soon as possible, Maddie was sick. She thought it was another UTI. The next day when I took Maddie to the vet, there was some confusion. The vet who saw her said it was a UTI and to stop her pneumonia meds. The vet who prescribed said meds said it was not a UTI and don’t stop the meds. An ultrasound found something strange, a possible “foreign object” stuck in her digestive tract. They tried to fill her with fluids to flush it out, and when this was not successful, they said to take her to what they call VESH, aka the emergency vet in Deerfield, aka Veterinary Emergency & Specialty Hospital, where they had saved her when she was hit by a car as a puppy. She stayed the night.

Will you get this off of me?

The next day, a surgeon called me to say that she would need surgery to get “it” out. She was so full of gas that they could not see what “it” was, by the way. I had half an hour to decide. I cried. I wasn’t ready to go up to Deerfield to put her down. Maybe I should have, because she was already past her life expectancy. It would cost $5,000, on top of the approximately $3,000 in tests over the past several days. I didn’t even have time to consult with my vet. She was 15.5 years old. Was I really going to put her through surgery? The vet said that after a couple of weeks of recovery, she could be back to where she was. I talked to the kids. They said they knew me well enough to know that I would second guess if I didn’t do it.

They did the surgery. It wasn’t what they thought. In non-medical terms, her colon was messed up. The next morning when I talked to the doctor, he said her colon had twisted, then untwisted, and he had done a resection. The recovery would now be more complicated. More dire though, something bad had caused it. Probably something like cancer. She would need more tests. She was having trouble standing up. If I took her home, she would have at least four weeks of diarrhea. Just as my first thought the day before was that I couldn’t put her down, my thought that day was that I would have to. Jeff came with me

They brought her into a room where we waited. She looked OK. I told her all the friends she would see in Heaven. "You'll see Sam, and Simon, and Winnie, and Misty," I said through the tears. I realized as I write this that I didn't say she would see Charlie, the Golden who attacked me. I guess I can be forgiven.

For the past year or so, when I looked at her lying in a patch of sunlight on the rug, it was like watching Sam on the blue living room rug, in his spot near the window. Was Sam still breathing? Was she? It seemed both like she could die any day and that she would never die. I didn’t put it on Facebook, but by writing on NextDoor that I was looking for ideas on what to do with her beds, it had almost the same effect. (Someone told me, correctly, that I could take them to Dakin, the Humane Society animal shelter in Springfield. I have packed them up and that’s what I’m going to do.) People have been so kind, sending me flowers and cards and feeding me cake. It is so strange to come home to a quiet house. I cried so much that I had to gasp for air. It stops and starts and stops again. She kept me company after the kids left. We have been alone together for a long time. I still think, when the sun starts to go down, that it is time to walk her. 

I found a pet loss support group through the Dakin website. The meeting was helpful. I am keeping busy though not sleeping as well as I usually do. Something about losing a dog makes me want to pull out weeds, or deadhead like I did with Simon. At tennis, George asked why I was playing so well. I said that maybe all the toxins had come out with the crying. Some people say to get another dog right away, some say not to get a “rebound dog,” and some say not to get one at all. I’m pretty sure that I will get a dog, though not right away. For some reason, it feels disloyal to do it too soon. 

Michael Gordon photo/Family Dog Magazine story

To wear, or not wear, the scarves, and other musings

My sister had lent my scarves to a friend who had cancer and wanted to know if I wanted some back or whether they would set off PTSD. I wasn't sure about the PTSD, so I said I'd give it a try. They came the other day. I picked one up, unfolded it, and made a bandit-style mask out of it. I folded it up and put it back in the pile. I'm still not sure. I can actually sense myself back wearing it. They served me well, so I don't feel bad about looking at them. But I'm not sure about wearing them. 

With Emily

People used to tell me, when I was bald, that my head head a very nice shape. I never knew exactly what to say about that. Thank you, I guess, but I didn't have much to do with it. When I was bald and shuffling along, Diane said I looked like more like my father than when I had hair. I always thought I looked more like him than my mother. It was OK with me that she said that. When I got out of the hospital and needed to learn how to walk again, Joe said that when I was shuffling my feet I looked like my father. My mother used to say, "Al, pick your feet up." That morphed into Joe saying "Mom, pick your feet up." I don't know why it was so hard for me to do it. Maybe because my legs had been swollen due to the kidney failure (like tree trunks or elephant legs, I couldn't decide which) and they had lost their muscle from all the time in bed. The ankle weights to wear while walking around the house helped. When running these days, I still feel like I don't pick my feet up high enough. If I try to change it, though, it messes up with my stride. My stride is my stride, I guess. 

Regarding masks, we wore them when going on the bike trail from Holyoke to Easthampton the other day. It wasn't too crowded, so at first I felt OK about it. But only about half the people were wearing masks. In hindsight I don't feel good about it, so I'm not going to do it again. Running around South Hadley feels safer. There aren't as many people. Though this morning I wore a mask when walking the dog and noticed more people out than I have seen later in the day. None of them were wearing masks. I felt like I had to dodge them. 

Many people are understandably having bad dreams. I actually had a good one. Most of my dreams about running or tennis are anxiety dreams. In the dreams, I'm about to run a race and realize I have forgotten to put on sneakers. I get lost and lose the route. (This actually happened once, in Holyoke, at the Talking Turkey.) I'm late to a tennis match, or I'm going to the wrong club and when I get to the right club, I'm too late and they've already replaced me.

In a recent good dream about yoga, my inner teacher was telling my inner critic to lighten up. (Not sure how that works.) To back up, I don't have a good relationship with chair pose. I feel like I get it right but when I try to integrate my arms it goes all wrong. In the dream, I was in a yoga class (real life, not Zoom) and we were all in chair pose. The teacher said my chair pose was good.

Here's something I wrote about the benefits of actual chair yoga, and here's something I wrote about the benefits of having a dog.

On May Day, I joined in my first rally and caravan for nurses and other front line responders. I had the idea for my sign, and Katie made it for me. We went past the Amazon fulfillment center in Holyoke and past Providence Behavioral Health Hospital, to protest plans to discontinue inpatient mental health services. To say the least, this is the worst time do such a thing.

The caravans happen every Friday. I plan on joining in again. 

Mysterious rash on face, marvelous trip to US Open

With Donna and Roger at the US Open

When I heard while watching Kaia Kanepi play at the US Open that she had battled plantar fasciitis in both feet – and almost quit tennis because of that and the debilitating Epstein-Barr virus – I could totally sympathize with the plantar fasciitis part. (She lost to Serena Williams in the Round of 16.)

My friends said I complained more about the heel pain than I ever did about leukemia. 

Actually I don't think I complained about cancer at all. That's because I expected it to be bad. The heel pain drove me crazy because I couldn't understand how an area the size of a quarter could be so debilitating. During one bout I skipped all exercise for about six months. Even walking to the end of the driveway, I felt like I was walking on crushed glass.

Now something new is driving me crazy. It's a combination of blisters and rash on and around my lips. Sometimes it hurts a lot, or stings, and other times it's incredibly itchy. I sent photos to my health care team. One doctor said it could be an allergy. Another said it could be, in his shorthand that took me a minute to figure out, HSV, or herpes simplex virus, otherwise known as cold sores, aka HSV1.

One possibility is that the herpes simplex virus broke out because they let me decrease the dosage on the Valtrex that I take as a preventative, because I'm on prednisone, from 1,000 mgs twice a day to 500. Dr. Marty said to in an email to increase the dose, so I did. 

I thought maybe the chemotherapy cream, Efudex, that I'm applying to select spots, had gotten onto my skin and irritated it. But through my googling I have learned that the cold sore can spread from your lip to other areas of your skin. So I figured it probably wasn't some stray Efudex. 

A friend at tennis said it looks like sun poisoning. She suggested Aquafor. It feels good to have something moist on it, but I don't know what it's doing. The pharmacist said to put aloe vera gel on. I said it would burn. He said not if it's pure. He sold me some. It burned. 

I came upon a story about shingles and decided that's what I have.

The pharmacist said stress brings the cold sores out and I should go home and rest.

What, me stressed?

I tried unsuccessfully to remember if a correlation existed between the outbreak and the outburst on the tennis court.

WHAT DIDN"T CAUSE ME STRESS was my fifth annual bus trip with Donna to the US Open Friday. It strikes me as funny that when I lived nearby, I never went. But as soon as I went on the bus from the Enfield Tennis Club, I was hooked. 

In my story about how tennis helped me recover from leukemia, I wrote about what the trip means to me.

Rafael Nadal, a speck

We've had fun every year, but the first year was more haphazard because we didn't know where to go. Now, we have a plan. It being USTA Membership Appreciation Day, we went to the USTA booth first to pick up our gift. It was a $10 gift card and a nice baseball cap with ... drum roll ... USTA member on it. 

Then we went to an outside court to watch doubles, sitting so close that you could see and hear how hard they hit it. This is the fun of going that I didn't understand when I lived so close but never went. 

The heat had broken. It was slightly cloudy, with a little rain here and there. Perfect weather for it.

When we were talking around, Donna said, excitedly, "I see Roger Federer!"

I jumped.

There he was, on a wall. A woman took a photo for us. 

We checked out the new Armstrong stadium and went to our nosebleed seats in Ashe – part of the bus trip package – to watch Nadal play the young Russian prospect, Karen Khachanov.  We went down further than our assigned seats, but due to the full stadium, they wouldn't let us sit in a lower section. We were close enough, though. Also, we got to see the new roof close.

I got a kick out of emailing my friend Francisco Marty, the infectious disease specialist at Dana-Farber, and getting a response in less than a minute. I told him about the rash and asked about increasing the Valtrex, and he wrote back, to increase, and also, "take a selfie with Nadal."

I wrote back that Nadal was too far.

He responded, "Tell him come up to you."

He always made me smile, even when I was deathly ill, and he had made me smile again.

Though we wanted to stay to the finish, we also wanted to see more action, so we left before the end. Out in the plaza, a crowd had gathered to watch the gripping finish on the big screen. We joined them. The world may be falling apart, but we shared this communal moment with strangers who cared only about a tennis match. (Nadal won in four sets.)

The bus left at 7:30, an hour later than previously. Our trek to the bus (it's a long walk) was much calmer than our first year when I wasn't feeling well. Our friend Deb Doner was leading the way, imploring Donna to get me to go faster, and to maybe even put me in a cart. Donna said she was doing the best she could but she couldn't pick me up! When we finally got to the bus, what happened next wasn't pretty.

US Open signature drink

That year it was scorching hot. I didn't drink enough water. I thought I only had one, but Donna says I had two of the signature Honey Deuce cocktails with Grey Goose vodka in a (plastic) glass with all the names of all the Open champions on it.

This year I only had one, and I wasn't sick, unless you count whatever is going on on my face. We got back to the bus early...and waited almost half an hour for two stragglers. It ended up being a long day. But I would do it again.

Meanwhile back at the ranch, I have been taking Tylenol, Advil, and occasionally a little oxycodone when the pain around my lips reaches a 9 on a scale of 1 to 10. Dr. Lin (Jennifer) said via email to apply 2.5 percent cortisone and Vaseline. She also said to stay out of the sun. I don't hit the Ativan much, but I took a little when I realized I wasn't breathing. (Well, I was breathing, of course, but not the right way.)

    

We went to a party. I tried, unsuccessfully, I'm afraid, to keep my hands off my face. The whatever-it-is was itching like crazy. At home, I took two Benadryl. The next morning I felt hung over.

I skipped George's clinic at the Canoe Club yesterday. Meghan's yin yoga at the Hampshire Y seemed like a better thing to do. It is the perfect combination of movement and stillness. Hearing her voice brings me back to Costa Rica. 

On the way home, I stopped at the Canoe Club. I sat under the umbrella and talked to George and the players who had just finished. I told him about the "I hate you" comment. He said he had overheard an exchange between my antagonist and another player. The other person had said, "That's uncalled for."

So this person is taking something out on others, and not just on me.

George said it's a long summer. It's not the first time that by the end of it, words can fly like tennis balls.

Today was the first day of an indoor contract at the Bay Road Tennis Club. It's split among six players. I thought of getting a sub, but I didn't want to do it on the first day, and I thought that it would feel good to run around. I figured while pain in my feet stopped me from playing, there was no reason that pain in my face should do it.

They are nice ladies and excellent players who don't take themselves too seriously. 

Will give a report in another post on the what is the reason for my rash, and what I'm going to do about it.

'Visiting' parents' bedroom, chewing over dietary recommendations

I dreamt I was in my parents' bedroom at 1200 Fifth Ave.

My father's bed was made, but you could see he hadn't slept in it. I looked over at his nightstand  and saw the framed black and white photo of his parents. I knew he was gone.

But my mother's bed looked recently occupied. The pale blue coverlet was on top. She hadn't covered it with her bedspread. So I knew she was around. But where? I couldn't find her.

It was part distressing, part comforting, kind of dissonant.

The day before I had replied to a leukemia patient wanting to know what a stem cell transplant was like. I said the infusion of donor cells itself was no big deal. It was just like getting blood and platelets. I didn't get into how sick you get during chemotherapy, but my dream picked it up.

That night I dreamt I didn't feel well. Someone came in and took my temperature. It was 105. Just like it really was on the night that my mother called every hour or so and the nurse assured her that she had wrapped me in cold sheets and I would be fine.

I also dreamt I had such a bad toothache that I needed to find an emergency dentist working in a hospital, but I had no idea how to find that person.

Today I go to the dentist to find out his plan for the chipped tooth.

On Sunday I went to see a nutritionist (yes, she works on Sunday.)

She said I should cut out sugar and dairy and that despite all the good stuff I put into it, I put in so much crap that it depletes my body of the good nutrients.

She said that the inflammation that I have from my graft vs. host disease of the skin would calm down if I cut out the sugar. She is a fan of maple syrup, though.

She said that most likely, sugar gave me cancer.

If you look that up, every other post says yes it does, no it doesn't.

I think my mistake was in telling her that after tennis, I go to Breezy Acres and get coffee cake.

She said I eat too much fruit and not enough vegetables.

I remember going through something like this a long time ago, before cancer, and telling my mother I was going to cut the sugar. She said please don't cut out the fruit, it has so many good things in it.

At Atlantic Beach, we loaded up with fruit from the fruit truck. It's part of my culture.

The nutritionist probably has a point about the coffee cake. I went one whole day without it, and I survived.

But seriously, it is summer and I'm going to keep eating local fruit. I will make an effort to cut back on it though, and when I go to get tomatoes or corn maybe I'll have to go to Dave's, or if I go to Evelyn's, avert my eyes from the coffee cake, but that might not work because the smell there is so wonderful.

Or maybe I'll cut back and get one sliver to have with my afternoon coffee, which I am supposed to cut out but that is not going to happen because then I won't be able to write.

I think she meant to cut it ALL out.

She is not a fan of the yogurt I have been eating in large quantities. I thought I was doing something good. It's very confusing.

I got some almond "milk," which might not be called milk for too long.

I guess I can try for a few weeks to adhere to it as much as possible, but in the back of my head, I hear my father saying, "Everything in moderation." He isn't saying, "Cut out all the fun stuff."

Also, I'm going to Wisconsin and I need to eat cheese.

It's summer, so what about ice cream? Maybe one scoop instead of two?

It can get old to call everything a First World Problem but when I get in a bad mood about this I do have to remind myself that it is a luxury to have this problem.

Don't count your chicken's before they're hatched

I think I might have jinxed myself the other day when, after the driver taking me to Boston checked in, I wrote on Facebook, "Encouraged because driver checking in with me about my ride to Boston later today sounded normal and polite. #Settingalowbar."

It wasn't that the driver was rude. It was just that he never came.

He called around 2 p.m., the time when he was supposed to be here to leave for my 4 p.m. appointment, to say that he was sorry but he would be about 15 minutes late because another driver got two flat tires and the boss insisted he drive someone to Holyoke before coming to get me even though it would make him late for me. He told me he hated the late-day shift and hated that the owner of the company made him do this and he hated to be late. He said the owner told him that he would still be able to get me there on time.

I told him not to worry. I have heard this about the car company owners before. They squeeze in more rides than they are able to do without regard for the passengers or, for that matter, for their drivers. Although I could have done without the rant about the shift since I had problems of my own.

In any case, when he didn't show at 2:15 I took my things out to the car in case I ended up driving myself as happened not too long ago. Around 2:25 I called MART, the agency which arranges the rides, and got through to the complaint line. (A miracle.) The operator put me on hold and said she had gotten through to the driver, who said he would be here in about five minutes. She filed a complaint for me and said to follow up if I never took the ride because then the company wouldn't be paid.

Tears of frustration welled up in my eyes. It wasn't just about the drive there at a time when I was tired. It was also about the ride home the next day (after an overnight) when my dermatologist would have zapped or biopsied who knew what. And it was about the time spent arranging three rides (including one from Dana-Farber to Diane and David's that night) and the time that I would need to spend undoing them.

Five minutes passed. I called the Kraft Family Blood Donor Center and said I would be late for my bi-weekly blood treatment, aka ECP,  and asked if it still made sense for me to come. The nurse said that I should come even though I would get a shortened treatment. I got in the car and left.

At 2:45, when I was on my way, the driver called and said he was on Woodbridge Street but couldn't find my house.

I figured that if I stopped and got coffee, I would be even later, so I pushed on through. I did pretty well except for, near the end, missing the left turn towards the Prudential Center and instead taking the Copley Square exit, adding an extra 10 or 15 minutes to the trip.

By the time I got there it was close to five. They always take my blood pressure. I suggested maybe they wouldn't want to. Actually it was quite low, 120-something over 70-something. I guess my body had figured out a way to cope with this situation; I had been there before. My nurse said some treatment was better than no treatment. So inserted the needle and hooked me up. It didn't take long for me to fall asleep.

After an overnight in Newton, I got up early and went to yoga with Diane. It moved a little faster  than most of the classes I take, but I kept up. I confess to looking around at the trim Newton bodies but turned my focus onto myself. (Or tried to.) When walking to the car afterwards, we discussed our problem areas – Diane's knees and my hands and wrists. My left hand especially will not flatten, and my hands and wrists will not bend at the usual 90-degree angle. I have been told this is mostly due to my graft vs. host of the skin,

Diane pointed out that what I can do is amazing: yoga, tennis, running, riding my bike. She reminded me that at one point I couldn't even turn over in bed, let alone walk. I said it had crossed my mind when I took a shower at their house that morning and remembered when I had to struggle to get into the tub and sit on a shower chair so Diane could give me a sponge bath.

Sometimes I forget. I thanked her for the reminder.

Then I changed and went to Chestnut Hill for my dermatology appointment with my friend Dr. Lin. I got stuck in Route 9 traffic and was worried about being late. As it turned out, she was running late, which I should have guessed. I was just falling asleep in the waiting room when I got called.

She zapped pre-cancerous areas on my neck, face, lips and hands. Not pleasant but we chat our way through it, with an occasional yelp escaping from my mouth. She did a biopsy on an area on my thumb (possibly squamous) and also one on the inside of my ear. She thought this one might be basal cell. Probably nothing horrible but if it is cancerous, I will need a Mohs surgery on it. This strikes me as not a great spot.

With my stinging and burning skin, I would have appreciated a ride home. But it was not to be. On my way out I did my usual pass through Waban, where there is a conveniently located Starbucks. First I pulled into a shady spot and fell asleep in the car. Then I went to Starbucks and got an iced coffee, followed by a stop across the street at Barry's Village Deli for half a corned beef sandwich to go.

Due to my training in the news biz, I can eat anything in the car.

It kept me busy and alert until I got home. By then the local anesthesia had worn off on my thumb and in my ear, and the zapped spots were burning. I took a little something and called it a night. The next day I made sure to call MART to say I never got the ride. When it comes to those rides, I will no longer count my chickens before they're hatched.

Thoughts of both parents around Mother's Day

With two other volunteers in Whately 

I usually walk Maddie into the woods at the end of my driveway to briefly do her business. The other day when she stopped and wouldn't go, I realized it was because I had forgotten to put her collar on.

"Oh, we forgot your collar, let's go back in," I said, and she turned around and obliged.

I usually take it off to "undress" her for the night.

It reminded me of the time my father was walking our dog Sam across the street from our apartment at night and a threatening man emerged from the park. My father jerked on the leash to get Sam to come. His collar slipped off and he froze. So Dad scooped him up and got back to the apartment safely.

Sam was a poodle mix before it was trendy. An affenpinscher-poodle, or affen-poo, or something like that. My mother's friend needed to find a home for him and my parents agreed to take him.

One summer at the beach they said my father was coming back with a Big Surprise.

We thought it might be a boat.

But my father brought home a black dog so small that he could fit in the palm of my father's large hand. Sam ran and hid under the car in our driveway at 77 Coronado St., Atlantic Beach. He of course came out and became a legendary part of the family.

As Mother's Day approached last week, if a person who thinks about their mother all the time could do it even more, I did just that. I took out my mother's handmade cookbook and made Aunt Anna's Company Chicken. I served it to a friend with parsley for garnish and candlelight or mood. (Marinate boneless breasts in dehydrated onion soup mix, whole cranberries and the dark kind of French dressing and cook at 325 for about an hour and a quarter. Before done put pitted black Bing cherries on top.)

For Mother's Day brunch, I put out the flower-rimmed placemats that she used for brunch in the apartment. Everything was beautiful; an artist on paper and in life. Doilies under plates, flowers on the table.

I didn't have enough little bowls of one kind for fruit, so I used a couple of different types and thought of her saying that everything doesn't need to match. Eclectic is more interesting. No milk containers or anything in packages should go on the table. We made an exception for the bottle of syrup.

I was kind of beat. I had gotten up at 4:45 a.m. to drive to Whately for the start of my 6 a.m. volunteer shift (handing out T-shirts) for the Cancer Connection's Mother's Day Half Marathon.

It was cold and rainy. For my last volunteer stint (Bridge of Flowers 10-K) we handed out T-shirts inside a school. I hadn't thought to ask what this would be like. It turns out we were under a tent, only partially protected. I didn't have on enough clothing to be comfortable handing out T-shirts. Luckily I had some gloves in the car but was still cold on this raw day. It took me half a day at least to get warm.

The volunteer coordinator said some volunteers had dropped out (many of them recently treated cancer survivors and patients). Understandably, they didn't want to get sick. I told her that I didn't have an excuse because it's been eight years.

Three of us handing out T-shirts sang and jumped up and down to keep warm. I was never so happy to see a Dunkin Donuts as when I headed out at around 8:30 to get a hot chocolate. All in all I was glad I did it.

With my 45th high school reunion fast approaching, I dreamt that I told someone that I wished it was my 15th and not my 45th. The person said it didn't really matter what year it was because we're all in the same boat by only being sure of this one day.

Dermatology doubleheader and alphabet soup

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

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

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

Internal sunburn yesterday, external today.

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

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

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

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

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

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

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

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

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

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.

Appreciating smell of freshly mown grass

Breathing in the smell of fresh-cut grass, which I did just now, makes me appreciate the smell that I had to avoid for so much time after transplant. I might have overdone it but when taking a walk I would keep a mask handy and put it on or even hold my breath when walking where someone was mowing.

I also took a wide berth around any construction sites or areas where dirt was turned up. Gardening was especially bad, and although nobody knows for sure where I got the aspergillosis that required lung surgery before my first transplant, it could have been from pulling a weed out of the garden without giving it much thought.

The Cleveland Clinic explains, Avoid gardening, mulching, raking, mowing, farming, or direct contact with soil and plants. Creating plant or soil aerosols increases exposure to potential pathogens (substances that can cause disease) including aspergillus and cryptococcus. This does not mean you should avoid the outdoors. Walking, biking, and many other outdoor activities are not only enjoyable, but will promote good health.

Some of the restrictions listed are for 30 days post transplant, but I remember this being a rule for much longer, especially on subsequent transplants

My doctor told me during my first rounds of chemotherapy in preparing for transplant, "If you get sick it will really set us back." Well, it did set us back, so I was super careful after that.

I'm not one of those people who says that cancer makes them appreciate every day so much more than before. IT IS NOT A GIFT. I'm still my same old self. But I'm grateful for the many times like this when I'm reminded of all the things I can do that I couldn't do before.

I wish I hadn't looked this up but I did and now I have to tell you that the smell is actually a distress signal that the grass sends out after being wounded.

Still, it is reminiscent of spring and summer and so we can embrace that part of it.

Was it a good dream or a bad dream?

In my dream, my mother died before my father. That wasn't the way it's supposed to be.

I was worried that he would be unable to take care of himself. I went to the apartment to talk to him. He was so unsteady, I worried he wouldn't even be able to make it to the store. I suggested he get rid of the apartment so he could come out here and hang out with the other elderly men at the JCC. I told him I had seen them congregate in the lobby, where they seemed to be engaged in lively conversation. He said he wasn't ready.

Meanwhile, my mother came back to tell me it would be OK. I asked her what she did when her own mother died. She said she let herself feel her feelings. Some days she was sad, but on others she was fine. I love it when she is sitting right by me. I like to believe she is really there.

On another topic, I dreamt I had to leave work (at the newspaper) for what I thought would be a quick visit to a doctor. A previous examination had suggested the possibility of breast cancer. (I had read a story about someone undergoing treatment, and my porous cancer-sensitive mind absorbed it and must have stored the fear that it could be me.) After two hours, I still had not been seen. I tried to text Mimi back at work to say what had happened, but my phone wasn't working properly. I never did get in to see that doctor.

But then I realized it didn't matter how long I was gone because the paper was closing in one week anyway, and nobody cared what we did. Still, I wanted to finish up a couple of stories. I went back and found some newspaper peeps and said how much I was going to miss them. I suggested we make a group email and send it out so we could try to get together in a year. Somebody said that wouldn't work, and I realized it was a far-fetched idea.

People were wondering what they would do next. Realizing the end of the paper was near, I had sent out some queries and had been offered a news writing job at the Hartford Courant. I told somebody that I was afraid I would end up covering meetings while all I knew about was writing features. The person said not to worry.

Cancer relapse/technology trouble/parental dying/newspaper nightmare all in one night.

But on the positive side, my mother came back to tell me it was OK, and I had a job.

Calling Dana-Farber

A sign that I've been around for a while: I knew many of the hematologists and medical oncologists among the 60 Dana-Farber physicians in Boston Magazine's 2015 "Top Doctors" issue.

Seeing Richard M. Stone on the list took me back to a wild Friday in April, 2003, the day after I received the shocking news that I had leukemia. I had gone to work at The Republican. Friends and family members called all day, determined to disabuse me of the idea that I would just be treated in Springfield. They said I would be crazy if I didn't go to Boston. I said OK, OK, but I didn't know exactly where.

Serendipitously, Diane's sister-in-law, Suzanne Koven, a doctor at Massachusetts General Hospital, gave her a name: Richard Stone, chief of staff and director of Dana-Farber's adult leukemia program. At just about the same time, I had been on the phone with my parents' across-the-hall neighbor, also a physician, who had given me the same name.

Close to 5 p.m., Diane called Dr. Stone's office. Over the years, when the two of us see him around, she whispers what he said when he picked up his own phone.

"Stone here."

What top physician picks up his own phone on a Friday afternoon? Luckily, Dr. Stone did.

He couldn't take me, but one of his associates, Daniel J. DeAngelo, could. I got right through to his secretary, something also amazing when you consider all the times you get a voice mail. She wanted to know my blood counts. They were somewhere in the pile of papers and notebooks strewn around my desk as I tried to finish up my stories. My editors, Mimi and Ray, dug around with me until we pulled the paper out. I don't remember exactly what they were, but they were low.

Dr. DeAngelo's secretary gave me an appointment for Monday. She said to pack my bags, because I wasn't going home for a while. The speed with which this happened still amazes me. Acute myelogenous leukemia is a fast-growing cancer, and I might not be here now if I hadn't gotten into the right hands so quickly.

Comment wasn't stupid after all

Somebody made a comment to me recently that, both in tone and content, I interpreted as belonging to the category of Stupid Things People Say to People who Have Cancer, or, thankfully, in my case, people who had cancer, but in some sense everyone who has had it remains a patient for life.

You can tend to be hyper sensitive, not just after cancer but after many misfortunes. Given a certain state of mind, you can get reactive, if not in words, then in how your body springs into over-alertness. At other times something might just float on past you, depending on your day or your mood.

The comment was more subtle than when I looked like a cancer patient. For example, it was in another class from the doozie, "You look like a concentration camp survivor" when I was bald and emaciated.

After this perceived "stupid" comment I wrote it up, leaving out identifying factors. But something kept me from posting it. Later I talked on the phone to a friend who said not to do it, it will only spread bad vibes. At that point I didn't need to post it anyway, because writing it got it out of my system.

Then, by accident, I discovered that this person had a whole other back story, and that what she said had nothing to do with me and everything to do with something painful in her life. It appeared in a new light. I don't know if this makes sense without details, but that's as far as I can go.

I can only speak for myself, but I have a sense that in these days of almost instant communication, we are too quick to hit send (on an email or text) or to hit post (on a blog or on Facebook). I can think of a couple of instances where I hit "send" on an email and then wished I had followed the advice of a different wise friend who said that when you are angry or upset, don't hit send until the next day when you are sure that's what you wanted to say.

In some cases, you have to say what you need to say.

In other cases, letting it go is better than letting it out.

I'm glad that in this case I took a step back.

Too much cancer talk not good before bed

It was a pleasure to be back at the Academy of Music yesterday and see the beautiful theater full of people there to watch a movie, a reminder of old days.

It was actually excerpts from a PBS documentary based on Siddhartha Mukherjee’s Pulitzer Prize-winning 2010 book, “The Emperor of All Maladies: A Biography of Cancer,” produced by Ken burns and directed by Barak Goodman.

When I got the email invite from the  Cancer Connection, I just glanced at it and thought Burns would be presenting the film, as in introducing it, rather than presenting as in producing! But no matter, I was glad I saw the excerpts and the panel discussion that followed.

 I would have gone anyway to the free screening presented by WGBY in advance of “Cancer: The Emperor of All Maladies,” a three-part, six-hour documentary scheduled to air on PBS March 30-April 1.

I had read part of the book, but not all of its 571 pages. Friends had vetted it for me, wondering if, so soon after my last transplant, I would be disturbed by the subject matter.

The book begins with the author, then a young doctor, treating a woman named Carla with acute leukemia, a blood cancer which "still sends a shiver down the hospital's spine."

Sorry to stop in the middle of a sentence, but you can get the idea about why I didn't want to read too much of this. But it was fine seeing the excerpts now, especially the one featuring Emily Whitehead, the young leukemia patient saved by a pioneering therapy and still in remission three years later.

With all of this cancer stuff swirling in my head, I should have taken a good book or my New Yorker  to bed. Instead, I wrote about the documentary for my Surviving Cancer blog (to be posted tomorrow) and then I made the mistake of picking this time to ask Joe to do the long overdue job of turning of my mattress.

Pardon the change of subject, but it all relates to a bad night's sleep. Did you know that you should rotate your mattress every three months? This topic came up with Diane and David. I have slept on the same side for so long that I have made a little burrow for myself.

After Joe flipped it for me last night, I could not get comfortable. The bed felt hard as a rock. I missed my comfy spot. Plus he had needed to move the bed and night table. I didn't move them back, and due to this laziness I feel like my chi was disturbed.

Meanwhile, I considered placing my head at the foot of the bed to find my spot (like a dog does!) but that would have defeated the purpose of saving my mattress.

So tonight, a little feng shui in the room, and no cancer before bed.

Actually it's Better Call Saul night. Not exactly a prescription for a good night's sleep, but an excellent distraction.

'Writing your way to happiness'

The headline in a New York Times Well column on Monday – Writing Your Way to Happiness – could not help but grab the attention of a writer.

This according to Tara Parker-Pope:

The scientific research on the benefits of so-called expressive writing is surprisingly vast. Studies have shown that writing about oneself and personal experiences can improve mood disorders, help reduce symptoms among cancer patients, improve a person’s health after a heart attack, reduce doctor visits and even boost memory.

Now researchers are studying whether the power of writing — and then rewriting — your personal story can lead to behavioral changes and improve happiness.

(That link leads to a study involving patients with renal cell carcinoma whose cancer-related symptoms were reduced and physical functioning improved after a trial of expressive writing.)

Those who keep journals know the benefits of writing down your thoughts. Sometimes it helps you figure things out. Sometimes it takes the pressure off and you can let a thing go.

After reading the Times column, I rummaged through my hospital stuff from the bad old days and found my journal, in which I wrote big thoughts and little ones. I "told" the journal some things that I was reluctant to say. For example, a day still stands out in my memory when I dragged myself and my IV pole down for a walk on the Pike and went through an area where cheerful people were laughing and talking, and I could not stand the fact that they were so happy. After I described the scene in my journal, I could let it go.

In high school we wrote with fountain pens dipped in ink, on blank white paper bound in black. It felt very artistic. Given some distance when I looked at them quite a while ago I was so embarrassed about writing repeatedly about a certain boy that I THREW THEM OUT. I think there should be a law against ever throwing out your diary. I still have the little red one from fifth grade with the "fool-proof" lock, however.

Well you can't throw out a blog. Sometimes I'm not even sure why I have written it since 2008, but I keep on doing it.

 I remember talking about our blogs with PJ – she had two, The Plog and Word in the Woods – and she said she didn't even care that much if people read what she wrote; she just wanted to do it. And Ann, of course, wrote almost until the day she died.

Naturally a writer likes to be read, therefore I like people to read my blog. But I also get upset with myself for falling into the trap of counting "Likes" and comments, a common malady for bloggers except for all but the most confident, I assume.

I have from time to time thought of stopping, but I keep going because writing the blog accomplishes that interesting thing described in the Well column, while not exactly what what you might normally think of as happiness but something more like calm.

This mechanism is undoubtedly why there are so many cancer blogs, and actually so much written about cancer and writing, for example a program at Memorial Sloan Kettering Cancer Center in which patients work with professional writers to create pieces that are staged by professional actors.

Websites on this topic include Writing and Healing: A Mindful Guide for Cancer Survivors, with prompts to get writers started, although judging from the way that words seem to pour out of the people who write about cancer, that doesn't seem especially necessary.

Lucky to be alive

In yesterday's New York Times, oncology nurse Theresa Brown wrote about a young woman dying of a fungal infection (like I had) after receiving a stem cell transplant from a matched donor to treat her cancer (like I did). (Providing the Balm of Truth)

The patient had been taking immune suppressants to keep the donated cells from attacking her own body; the problem was that patients like her (and me) are susceptible to infections that wouldn't bother healthy people.

Brown wrote about the family members who couldn't believe they were losing their loved one and about her own attempts to help them in their struggle to accept that nothing more could be done. She also wrote that roughly 30 percent of patients are dead within a year of such stem cell transplants. That figure seems a little high, but still, it is a stark reminder of what could have been, of what almost was and of how lucky I am to be alive.

I am continually grateful for the brilliant doctors at the Dana-Farber Cancer Institute and for my donor, Denise. I am grateful for the research that has brought us so far. I am saddened by the story of this young woman but hopeful that more and more outcomes will be happy.

That said, I wish all my Jewish friends (and family) a good Passover and wish all a happy spring!

Comments about cancer can be weird

Sometimes people mean well when they learn about my cancer history, but still, they can say the darndest things.

There's no reason to bring it up to most people, but sometimes it just happens. I was subbing in a doubles game last week and didn't really know the people. We got to talking afterwards and I said I was on my way to have a tooth pulled, and the reason for the tooth's bad shape was the prednisone, and the prednisone was from Graft vs. Host Disease, which was from the transplant, which was because I had leukemia. Long story as short as I could make it.

Today I played in a round robin with one of the guys from that group, who is a fine fellow (and a good player) but kind of an odd duck. He said he had been thinking about me, and I thought that was nice, and then he said he wanted to talk to me about screen savers. He asked if I had a 15-inch screen because he knew of places on the Internet to get beautiful screen savers.

This was before we played. Afterwards he said, "When you've faced the grim reaper, you could use some beautiful pictures to look at."

I said I was happy with the photo that I took of the beach at Wellfleet. He kept talking about calming pictures of waterfalls. I said really, I was all set.

He seemed taken aback, but then so was I.

Speaking of cancer

A column in today's New York Times, headlined "Cancer: Fighting Words," revisits the topic of combat metaphors about people with cancer, as in saying that they are fighting, or battling an invader.

The author, Daniel Menaker, a recurrent cancer patient, says he supports "the demilitarization of cancer talk." He says it seems "more calming, less victimizing," to think of the disease as a problem to be worked on. He says that by putting the disease into the context of a fight, those who die might be considered losers, and he quotes a blogger who asked, "Does it mean that if I croak it's my fault?"

On the other hand, Menaker writes that he understands how it got this way – cancer does invade different parts of the body while other diseases stand still. And he gets that warfare language helps provide motivation for the task ahead.

He reasonably suggests that there is room for looking at it both ways, but falls short in suggesting "a rational, problem-solving approach" in public discourse and a martial attitude in more private or interior contexts.

His proposed segregation of attitudes doesn't work for me.

When I was battling for my life, according to this author I should have said I had "a problem" while being quiet about my knowledge that an "invader" (a military term) was seriously threatening me.

It was more than a problem. I wasn't dealing with leukemia the way I dealt with my foot problems.

I do think that in using warfare terminology, people need to be more clear that a patient is a not loser when treatment fails.

Also, most everyone talks about the need for a positive attitude, but some go overboard on this. Of course a positive attitude helps, but if you don't have it every day, or if cancer gets the upper hand, does this mean you haven't been cheerful or strong enough?

I think often about my beautiful friend Ann, who died of lung cancer in her 40s and who was one of the most positive, cheerful people I ever knew. Sure she complained about things, but she was just naturally an "up" person.

When I hear this garbage about "positive attitude or else," or detect an implication that death means not having fought hard enough, I think of Ann and know that's not how it works.

She survived much longer than expected, and even on days when she felt sick, if you asked her how she was, she'd say, "Good." She'd lengthen out the word on bad days, but that was the only sign she often gave.

So yes, modify fighting metaphors when appropriate, and leave room for people who prefer a problem-solving approach, but don't tell cancer patients to talk openly about their "problem" while whispering about their fight.

When do you stop playing the cancer card?

First of all, I know it's not a game, but that's the way many of us refer to it, partly in jest but partly seriously.

The question comes up when you have enough distance to wonder under which circumstances you might be tempted to use cancer as an 'excuse' for perceived weakness.

A larger question is at what point you stop mentioning it so frequently. This is not the same thing as 'playing the cancer card,' but I noticed that when talking with someone new the other day, I didn't even mention it when we discussed our running routines.

In a way that surprised me, because I am used to describing myself at least partially in the context of my medical odyssey. I was pleased that I had enough distance to describe myself in another capacity, i.e. runner.

 If I had provided any caveat, it might have been that I am coming back from a fractured foot rather than I am coming back from my fourth bone marrow transplant and a coma. (We did get onto the subject of stress fractures, and this die-hard marathoner had me beat, having already suffered four.)

I'm more likely to use the cancer card when playing tennis with good friends. I'll say jokingly, "Sorry I missed that ball, but I was in a coma not too long ago." I try not to do it often, because a little joking about that goes a long way.

 I thought about this today at our Wednesday clinic with George. It's like camp for grown-ups. We do drills for hand-eye coordination and racquet control and play little games before we actually get to play doubles. (It's a pretty inexpensive camp: More than three hours of drilling and playing on clay courts overlooking the Connecticut River for $10 each.)

In one of our games today, George placed a tennis ball on a pretty high post at the center of the net. We played mini-tennis (using only part of the court), and if you hit the post without letting the ball bounce, your team won the game.

I hit it twice, and our team won two games to one.

We reported our scores (and told him which of us on the three courts had hit the post) and sat down for a break. George said everyone was welcome to return at 6 for a similar clinic.

"Ha!" I said.

He looked at me quizzically.

"You New Englanders are all the same," said George, who happens to be one too. "You wait all winter for summer to come, and then all you want to do is sit inside your air-conditioned homes."

Hey George, we were outside right then in the heat, but what the heck.

Now that I write it, his comment sounds kind of harsh, but if you knew him you'd know not to take him too seriously and accept comments like that as part of the banter.

I didn't speak loudly enough to share this with the group, but I did lean over and say to him just as we were about to return to the courts, "People tell me I should try not to overdo it. You know where I came from."

He does know, because he helped bring me back each time.

He looked at me blankly.

 "You think I'm far enough past it that I should stop using that as an excuse?" I asked.

"Yes, anyone who can hit the post twice doesn't need to do that."

OK then.