Wednesday, September 2, 2015

Great expectations, anxiety dreams

Last night I woke up every hour because I was so excited about seeing "Waitress the Musical" at the American Repertory Theater in Cambridge tonight with twins Wendy and Lisa and my "twin" Margaret. I am lucky to have a prescient daughter who tells me when shows are going to be very hot. She clued me in, and I got the tickets when it was in previews, before the announcement of its Broadway run.

That is not exactly the point of this post. The point is that while having this great thing to look forward to, and coming from a fabulous dinner last night with my new friends from The Canoe Club, my dreams reveal the anxiety that lurks beneath the surface. For example, in real life, I have two scratches on my thigh, courtesy of an over exuberant dog. In my dream, Dr. Alyea, when giving me a checkup, noticed little dots in that area. He was worried that they were petechiae, those tiny dots that at one point in the thankfully distant past signaled low platelets. (As low as two. Hard to believe.) No they're not, I said, realizing that they were allergic reactions to a pill.

I guess it might be a sign of healing in your psyche when you dream of something potentially horrible and then realize it's not going to do you in.

In the rest of the dream, I had just returned from a great trip with friends, and when Dr. Alyea asked me where I had gone, I couldn't remember. I tried to call Emily, but couldn't remember her whole number and couldn't figure out how to access it in my contacts. When I finally reached her, she said we had gone to Paris and some Arabic countries, and I couldn't remember any of it.

I was grungy from the trip and had to take a bath, and when I got out and was wrapped only in a towel, Dr. Alyea said he might as well examine me then. He set up an exam table in a hotel room. Or maybe it was a school, because little kids were coming in there. I asked if they had to be in there, and he said yes, they had no place else to go.

Maybe this part of the dream was all about all those "little kids," i.e. the doctors so young they look children. And about the exposure.

But the sun is coming up, and a new day is drawing, with tennis at The Canoe Club, a dog to walk, and hopefully a nap before I make myself presentable, or as my mother used to say, get gussied up.

Sunday, August 30, 2015

When bad things lead to good outcomes

I had a lovely brunch yesterday with my friend Bev Bloomberg at Jake's in Northampton, where I reminisced about how Jim and I, when living in Florence, used to bring our newspapers down there.

It was funky back then, which I liked, but it is also good now with its more upscale menu (and better coffee.) The waitress was funny and had a good suggestion when I said that I always like pancakes but feel that I should eat something more healthful. She said that I could order one healthy thing and one not. So I got one pear pancake with real maple syrup and a side of scrambled eggs, goat cheese, tomato and kale. I prefer spinach, but I avoid it because I am still working hard to get rid of that iron overload (resulting from multiple blood transfusions) by ingesting nauseating Exjade every morning. The waitress and I agreed that we both do not like kale but that disguising it in eggs is a good way to go.

Bev and I had gotten together to catch up and also for me to bring samples of blue stones for two nurses who want to purchase watches like mine. The blue watch on the right is mine; if they want, they can buy the turquoise one or wait for her to make one out of the sample stones.

 We joked that with her taking blue things out of a plastic baggie, we felt like we were in a scene from "Breaking Bad." She makes the blue stuff, I deal it.

When the conversation turned to seemingly bad events that had led to positive outcomes, I realized I had a new medical adventure that was turning out differently than I expected, namely the ECP, or photopheresis to treat my graft vs. host of the skin.

I was dismayed when I learned in May that I had to do this for two consecutive days for three hours at a time for 12 weeks and then one day a week for another three months (where I am now) and then  after that with decreasing frequency.

But in addition to improving my overall movement and my tennis game, it has led to meeting a new group of warm, funny, caring nurses and another great doctor, William Savage, medical director of the Kraft Family Blood Donor Center. He is so easy-going and friendly. The first time I was in there I was squirming in my chair with that big needle in my arm and couldn't believe I could last for three hours, but he said, "Just make yourself as bored as you can get, and the time will pass."

Actually (except for the matter of the big needle and keeping my arm straight), I can now say, although it is hard to believe, that it is pleasant to be there. The nurses fuss around, arranging your pillows, bringing a warm blanket, joking and sharing their stories. I mostly read the New York Times on my computer, or watch a little something on Netflix, or read a bit of a New Yorker or a few pages of a book. It's hard to turn pages with one hand. Most often, I fall asleep.

Dr. Savage is especially interested in the changes in my tennis game. First thing he says when he walks by is, "How is your tennis game"? I'm the only tennis player who has passed through there. I said maybe they'll do a study on me. I also told him that I'm moving better in yoga because my skin is less tight.

The other things that came up with Bev were:

#1 Bad thing: losing 12 teeth due to being immunosupressed for so long, with the positive outcome of one of the surgeons seeing a suspicious spot on my tongue and that spot turning out to be precancerous cells. I'm not saying it was fun to have a piece of my tongue scooped out – it hurt like hell for a long time afterwards – but that was the end of it, and I was saved from a worse outcome. I thought about this when beautiful Ann Gregory survived a blood cancer and a bone marrow transplant but succumbed to a squamous cell cancer that started undetected on her tongue.

#2 Bad thing: missing my cousin Nancy's 60th birthday bash in California due to double pneumonia that landed me at Brigham and Women's Hospital instead of on a plane going west. Positive outcome: a scan to find out the extent of the pneumonia led to the discovery of a small kidney lesion (euphemism for cancer) that otherwise would have gone undetected and most likely led to full-blown kidney cancer. A surgeon was able to remove a small section of my kidney. Not that it was fun to have that kidney resection surgery on Katie's birthday two years ago – and again, I remember standing in my kitchen crying hysterically because the pain medicine wasn't working and the doctor's office hadn't returned my calls – but now all I have is the scar and the memory of another narrow escape.

As I write this I can hardly believe this all happened to me.

But it did, and I just want to say, you just never know how things will turn out.

Thursday, August 27, 2015

A funny thing happened on the tennis court

George and I were partners when we played doubles at the end of our clinic yesterday, and it was set point (us) with me on the ad side, and the ball floated a little out of my reach onto his side, and he said in his monotone (he never gets excited), "mine," but the ball called to me and I flew into the air and smashed it for a cross-court winner! Game, set, match. George seemed surprised.

Well, I didn't actually fly. Basically, it seemed like that because my feet left the ground a tiny tiny bit. George always tells me I should jump because I am tall and can get more balls than I think, but it's hard for me to do. In any case it was a good morning. The black tennis skirt that Ben, Meghan and Nell gave me for my birthday improved my game. Also, as I have said before, the photoperesis is helping my movement. I feel better in my own skin. Who knew?

People say I look better. I don't know exactly how to take that because it makes me wonder what I looked like before. But I'll take the compliment.

I behaved myself all week, just taking walks but chomping at the bit (an odd thing to say since I am not a horse but it works for the situation) and wanting do more. I did go to a "body sculpt" exercise class at the Y Tuesday night so I could get some exercise in my arms, being careful to modify.

I figured tennis was OK yesterday because the stitches were due out that afternoon. Char, our resident doctor, excellent tennis player and funny man (retired from Holyoke Medical Center), said, "Just run around, they'll fall out!"

I had brought nectarines to share at our break time; I didn't cut them before because that would have made them mushy. When I offered them to George he said, "Just spear it with your knife." I was careful not to stab myself.

Today I am driving myself into Boston. I canceled my ride and am going to spend the night in Newton and drive home tomorrow so as to not do the whole thing in one day (which would mean arriving home at 9 p.m. or so). Yes, the rides with MART save money. But they were also supposed to save on energy but have done the opposite in energy expended dealing with horrible drivers and passengers. I will probably try it again next week, though.

Monday, August 24, 2015

Reflections on a birthday and a baby visit

A funny thing happened to me yesterday when I went for the day-before-my-birthday lunch with Ben, Meghan and Nell in Fairfield: In this age of Facebook where I am as guilty as the next person of sometimes oversharing photos, I didn't take any at all.

I was actually in the moment. How crazy is that? Although it's good to have everything so easily documented on our iPhones and tablets, "the old days," when you had to actually reach for a real camera, had advantages.

I took the accompanying photo off Facebook, just so you can see. Next time I will have someone take a photo or two or three of me with her, just so everyone knows I was there.

But yesterday, I looked at Ben walking around with Nell so peacefully cradled in his arms and thought for a second, oh that would make a nice picture, but I didn't reach for my phone. I sat on the couch next to Meghan while Nell was on Meghan's lap and held out my pointer finger and my granddaughter wrapped her tiny fingers around it. I touched her perfect, soft skin, and watched Meghan do a funny thing – she heard that if you stick your tongue out the baby will do the same thing  – and it happened! Of course she also showed she has a good set of lungs by scrunching up her little face and screaming and bicycling her legs.

She has sweet bow-shaped lips and also, something interesting, a tiny chip on the top side of her ear just the same as Ben's. Meghan said she's going to look like Ben; she hopes Nell will have more hair, and I said don't worry because if she looks like Ben she will look like Katie (because Katie and Ben look alike) and she'll have beautiful, lush hair.

Ben, Meghan and Nell gave me a pretty black tennis skirt and two cans of balls. Joe stopped by to say hello and to give me an I.O.U. for a gift from the U.S. Open.

So, it's my birthday. Ben wrote on my card, happy sweet 61. It is sweet in so many ways. And also, time to think of how many birthdays I have had. Those 61 plus the others with the clock resetting with my four transplants. Let's just count the good one, Jan. 31, 2009, so either I am six years and eight months (yes, I still count them), or, as I said in a stage whisper if you can do that when typing, 61.

At 48 when all of this started, the future did not look so bright. And as I wrote after Nell's birth, I said many times, "I'm never going to see my grandchildren," especially on that dark night in December 2008 when I had relapsed again and thought I was at the end of the road.

What a long strange trip it's been. (Thank you Grateful Dead.)

Thank you Denise, Dana-Farber and everyone else.

Friday, August 21, 2015

'Pillow talk' in the Berkshires

I didn't do anything crazy yesterday – just took a little walk – but I jumped at the chance when my friend Ken Ross texted and said he had an extra ticket to that night's L.A. Dance Project's performance at Jacob's Pillow.

Almost show time
Ken, who was reviewing the show, gave me door-to-door service. I enjoyed everything, from the chance to catch up while driving, to the magical setting in Beckett, to the ballet set in modernistic scenes in three acts, each different, with a touch of narrative and humor included.

Ken pointed out in his excellent review that the moment the dancers donned sneakers at the beginning of the first act, you knew that you were in for something special. It is interesting to see dancers looking like everyday people in street clothes performing extraordinary steps that ordinary people couldn't ever do! And as someone who can barely balance on one foot, I am doubly and triply impressed.

Adding to the magic, at the end of the show, the back of the stage gradually opened to reveal the woods outside (just, it seemed to me, as the dance became more naturalistic and free-flowing).

Also, I got to add another ticket to my ticket bottle. (I noticed when taking a close look that I had an $8 ticket from the Mount Holyoke Summer Theater alongside the slightly more expensive Broadway shows and the less expensive (free) tickets to Shakespeare in the Park.)

I had had a cup of coffee before I left home, so it was a little hard to get sleepy, especially with visions of dancers in my head, but it was worth it.

Thursday, August 20, 2015

Don't try this at home

Waiting to get stitches in the ER
I was all set yesterday to go to George's clinic, and had even left myself a note to bring the fresh local watermelon I was going to share at our break, when I went to drag the trash down to the street and did a stupid thing.

Thinking I was late for the pickup (when actually I wasn't), I grabbed the green bag out of the bin in the kitchen and dragged it down to the street. I have been putting the heavier bags in my garden cart to take down to the street to save my back doing the job that was formerly Joe's, but this time I didn't. When the bag (in my right hand) brushed against my left ankle, I felt a sharp pain and looked down to see blood gushing from the spot. It ran down my leg and into my sandal, which by the way I was worried about ruining.

I grabbed a dish towel, wetted it down, and wrapped it around my ankle and applied pressure. The gash looked pretty deep. With the towel wrapped around my ankle I got upstairs and applied antibiotic cream and two bandaids. After I went out and hosed my sandal down and it was still bleeding, I decided I better call 911.

Being close to the fire station has definite advantages. An ambulance arrived in minutes, and in came my old friend, (semi) retired fire chief Bill Selkirk, who had triaged Maddie when she got hit by a car (and probably saved her) and who had arrived at the lake when I cracked my head, and who is just generally a good guy. He and a nice EMT said I better get stitches, got me into the ambulance, and away we went to the Holyoke Medical Center ER. Early morning is a good time to get injured, and I got seen quickly.

The physician assistant who gave me five stitches turned out to be one of Joe's high school friends, Jenna Turcotte; we had a nice chat while she took care of me. I took a photo of her and texted it to Joe, writing, "Look who's giving me stitches!" I also had to get a tetanus shot. Afterwards, it was nice of Deborah to rescue me.

Of course I felt stupid about breaking a plate and then throwing it in the trash, and not thinking about what I was doing, and it hurt afterwards, and I could hardly walk, and I missed our super fun tennis, but all things considered it is not such a big deal.

Jim Bloom had Maddie because I had left her there thinking I would be gone for a while, so later in the afternoon I went down there. Their house is so pleasant with its central air, compared to my loud room air conditioners. I lay down on the couch and watched the end of a movie with him (and his 100-year-old mother Nellie), and then Fox News came on, which made me miss Jon Stewart, but I dozed off, and when I heard Jim working in the kitchen I said I was going to go home, but he said to stay. He had already set a place for me at the table, and then Jane came home and we had a wonderful dinner: baked salmon, salad, beets and snap peas.

Maddie doesn't like to leave there, and sometimes neither do I! She walks into the crate where she sleeps when she stays over and then gives me a look. When we got home, I finished the chocolate ice cream and gave her a carrot. I think she likes the snacks better there.

Monday, August 17, 2015

When it comes to phones, not ashamed to be retro

I must have bee the most retro person at the Holyoke Mall on the tax holiday yesterday because:

1: I bought a new case for my iPhone 4S.

2: I bought a new landline.

It is getting harder to get a case for the 4S. When I couldn't find one at Best Buy, I thought I might have to get a 6 just because I can't find a case for my antique phone. But I did get one at the kiosk in front of the Apple store, in which shoppers were swarming. There is nothing wrong with my 4S, and I like the way it fits in my pocket.

I still like having a landline, although a child of mine questioned why "you people" use them. I don't like the way the iPhone heats up when I talk on it for a while, and using a headset doesn't do it for me. And though the possible link between cell phones and brain tumors is controversial, I still like the idea of giving my brain a break.

All this phone business triggered a dream.

I was trying to call my mother. I couldn't find my cell phone. The dial pads on the land line were not working. I asked a man if I could borrow his cell phone but it looked strange and I couldn't figure out how to use it.

We were going to meet at the beach, but Diane and I had gotten there first. It was our father's birthday, and we wanted to console her. Diane said they had already talked and our mother was OK, but I wanted to hear it for myself. We had gone down to the ocean, and I got the key from Diane to go back and look in the house. Mom wasn't there, but somehow I was transported to the New York apartment and found her covered up in her bed. When I sat down on the edge of the bed I thought she was crying, but really she was just talking on the phone to a friend.

Enough with the phones!