It can get worse

I probably didn't need to take the whole milligram of Ativan when I got home last night but I was once again so upset after a long horrendous ride that I "treated myself." I should have probably gotten right in bed but first I made a grilled cheese sandwich because it was after 10 and I remembered that I hadn't eaten and after that I was a little unsteady.

Today: Wake up with an Ativan hangover. Drink coffee. Plan to go to 10 a.m. yoga class at the Hampshire Y. Take my computer to write someplace. Follow up with more coffee and a scone or muffin. Thought of it makes me feel better already.

I need to ask Hannah at Dana-Farber to put in a request for me to take the MART rides alone. A call taker at MART told me that I could do this when I called about a disruptive passenger who I learned was probably on her way to a Meth clinic.  If not I'm going to cancel my rides and drive alone or ask friends. These stress hormones can't be doing me any good.

This time the driver, Kenny, was OK and actually told me I was not alone in finding Alex bizarre. His real name is Igor, and he hates women and is going through a divorce and was probably acting out on me. He said the owner took all the drivers shooting but didn't want to ask Alex/Igor  because he is not quite right. Still, the owner keeps Alex/Igor on because they are both Russian.

The problem was with the company itself which scheduled two people whose destinations at both ends of the trips were not in close proximity. I was scheduled to be picked up at 12:45 but Kenny called and said could he come around noon or else the other woman would be late. I wasn't even home but I said that I would try. I was on time and she might have been a little late, which was the company's fault, not mine, but you will see that she played that against me later.

The real problem was on the ride home. Kenny said the other woman lived in Springfield and did I mind if he took her home first because he lives closer to me. Not thinking how far afield she lived, I said OK. But then this happened: It was by now 8:45 p.m., two hours into the ride, and I had already been sitting in a chair for three hours getting my blood sucked out, and she asked if he would pull up to a drugstore so she could get her diabetes medicine. Obviously she had known about this all along and if she had been up front about it I would have asked to go home first. You might have thought she would have gotten it before she left.

He said he is really not supposed to to that, and I echoed what he said. She got agitated and said her car is broken and her niece couldn't get it and I said I really needed to get home. At that point she basically lost it and started shouting at me that she had to wait for me and I was going to wait for her. I said let's just drop it and she said no she wasn't finished and she kept on carrying on. At that point I lost it and even writing it the next day brings tears to my eyes. I said let's drop it and she said she wasn't done and just kept on shouting at me.

Well it was more like 15 minutes. Kenny said he should have told her to take a cab but I think he was intimidated.

Beautiful start to the day with tennis at the Canoe Club.
Another distressing end.
Something has to change.

On high alert

But sometimes worrying is good for you

Today is my day to go to Boston, and the anxiety created by being stuck in the back seat with the psycho driver last week is spreading its tentacles into the beautiful morning.

It is not the freaking out kind of last week but more of a low level that is probably a good thing: a survival instinct keeping me on alert.

I took the appropriate steps, filing a complaint and writing a negative review on the website of the Prevalent transportation company. Also, Hannah in the Dana-Farber resources department said she would follow up.

When I got the automated call last night saying which company is picking me up, it was Prevalent again. I called the number and said to not send that driver because I won't get in the car with him.

I'm going to have a bag packed and a full tank of gas in case I need to drive. Since I lose some blood during the procedure and also because, even though I often doze, it's not a real sleep, I wouldn't want to drive home when I'm done, which is usually about 6:45, so I talked to Diane about sleeping there if I need to.

Some people have asked if this transportation arrangement is worth the hassles. Well, it is, because I wouldn't feel safe driving home afterwards. As stated before, except for the one who left without me because he wouldn't go down my driveway, all the rest have been fine; we've even had some interesting conversations.

The problems really stemmed from The Ride and mixups between the two different cab companies driving me to Newton or Needham, but now that I am done with that I hope it will go more smoothly...as long as the psycho driver doesn't come.

But first, a little relaxing tennis on at the Canoe Club to hopefully let off some anxiety and get tired enough so that a nap will come easily when I have that big needle in my arm. I'm so glad I joined. It was inexpensive and it is a great group of people, serious enough to want to have a good game but not taking themselves too seriously.

Actually there are some real jokers in the group, such as one man, Char, who makes fun of an idiosyncrasy of mine: If I miss the first serve and leave the first ball at the net, I always miss the second serve because it is a distraction in my peripheral vision. Sometimes I ask the other player to move it and then the player says don't worry it's not in the way and then I make a little fun of myself and say my concentration is too fragile to keep it there.

When Char is on the other side and a ball rolls to the net, he has taken to moving it to various spots such as putting it on a post or moving it to just under the net and asking with a big smile, "Is that OK, is that OK?"

Tennis+laughing=a good time.

Ten (random) things

1. Things I dreamt.

My father was standing at the net, slicing the ball at an angle, and I thought, "Oh, I see where I got my love of being up there."

My mother and I were making beds in my bedroom in New York, and she said, "There's nothing like clean sheets." I agreed.

2. Things I realized.

If you make a big batch of blueberry pancakes, douse in syrup and fry an egg and then eat the whole thing, your stomach is going to hurt.

If you take all of the pills out of the bag and put them in pillboxes, you're going to save time in the long run as opposed to fishing around and pulling the bottles out one at a time.

3. Something I am determined to do.

Keep a full tank of gas in the car just in case the psycho driver shows up anyway even though I asked them not to send him again. Then drive away.

4. Some things that make me sad.

Not being able to sit down and watch last night's "Daily Show."

The days getting shorter.

5. Some things that are nice.

My friends Jim and Jane Bloom (the happy millionaires off a $5 scratch ticket) keeping Maddie overnight when I had a tennis match and went out after, and then having warm chicken stew and biscuits ready for me when I picked her up today.

Going out for pizza with tennis friends.

Local blueberries, tomatoes, peaches and corn.

Realizing that even though I haven't kept up with the weeds there are still enough flowers for a small bouquet.

Taking out my corn plate.

6. Some things that are satisfying.

Finishing a feature story and turning it in. Being able to play three sets. Hitting the ball at the net.

7. Something that makes me happy.

Seeing the daily photos of Nell.

8. Some things I wonder about.

The popularity of Donald Trump.

Why Brigham and Women's bills my insurance for $11,730.00 each time I get ECP, or "Mechanical separation of white blood cells and platelets from blood."

9. Some things I can't figure out.

Where I put my spare pair of glasses. Where I left my pink hat.

10 (a) Something that wakes me up.

Maddie snoring in the middle of the night.

10 (b) Something I like.

Maddie coming upstairs with me when I say, "Time to go up" and bringing a toy and settling in on her L.L. Bean bed and lying down while I take off her collar.

Hiroshima and Nagasaki, remembered

As a subscriber to the New York Times "What We're Reading" email that lists editors' top picks, I couldn't help but click on the one linking to John Hersey's New Yorker essay, "Hiroshima," written a year after the U.S. dropped an atomic bomb on Hiroshima (Aug. 6, 1945) and on Nagasaki, three days later, which would be today, Aug. 9.

Here is the intro that caught my eye:

The New Yorker Witness to the Inconceivable As Japan marks the 70th anniversary of the atomic bombings by the United States, it’s well worth returning to the seminal article that laid the horrors of nuclear warfare before the world. John Hersey’s meticulous recreation of the moment the bomb hit Hiroshima, and his intertwined tales of victims, survivors and a shaken country, holds up 69 years after it was published. It set a standard for narrative journalism and bearing witness.

Here is the link to the article.

I didn't mean to, but I read the whole thing both because of my interest in narrative journalism and because the dates pass through my mind most years. I posted it to Facebook and then deleted it because it is not the kind of thing people usually share.

You probably don't want to read it on a nice summer day. It's not useful to sit around feeling guilty,  but if you follow politics and the debate over the pros and cons of the Iran Nuclear deal, it's worth a thought that it is nowhere in the U.S. consciousness that our country is the only one that dropped the bomb and not only that, we did it to civilians, twice.

People are thinking about it, however.

Alex Wellerstein's, "Nagasaki, The Last Bomb," is fourth on The New Yorker's most-emailed list.

I read that one too.

Here is the history on the bombings of Hiroshima and Nagasaki.

But now, back to reality, a sunny, less humid day, good for a lot of good things.

Bad time in the back seat

My previous transportation problems seem mild compared to Thursday's, when the driver Alex from Prevalent Transport appeared to have some serious mental problems.

It started when he called me 45 minutes before he was supposed to pick me up and asked in a barely comprehensible Russian accent if I could be ready in 15 minutes. The sprinkler was on, the clothes were in the dryer, pills were not taken, etc. so I said I would try but I wasn't sure how much earlier I could do.

He shouted into the phone, "It takes two and a half hours to get to Boston and I know what I'm talking about because I've been doing this for 12 years and if you get there any faster you probably speeding and sometimes I take little kids in the car and I won't speed." After I told him that two hours was usually more than enough time, he argued with me some more.

When I call to make arrangements with MART – which contracts with various companies to take patients to medical appointments – I say what time I need to arrive at Dana-Farber, and they schedule the pick-up time for two hours earlier; so, Thursday I wanted to be there at 11 a.m., hence the scheduled pickup at 9 a.m.

 I said I was going to file a complaint about his rudeness and I would try to go faster but I doubted I could be ready as fast as he wanted, and then we hung up and he called back in a voice so calm I thought it was a different person and re-introduced himself and said he would be there at 9. He arrived early anyway. A big guy wearing black sunglasses and dressed all in black, he barely looked at me. I don't recall him greeting me either. A man also going to Boston sat in the front seat.

I am usually pretty tough, but something about being in a car with him totally freaked me out. As I called the main office from the back seat to file a complaint and say I didn't want to ride with him again, I started to cry. He said he was recording everything I said.

When he got off the Mass Pike I saw why it takes hime so long. He took the Natick exit and drove all the way in on Route 9. I said everyone else goes further east, but he said he knew what he was doing and he didn't like the traffic at the closer exits.

When we finally got to the Longwood area he passed the turn that would have taken us to Dana-Farber and took the the other person to some out-of-the way place, making me half an hour late. I asked what time the other person's appointment was and he said it was confidential information but since the other person got in first he was dropping him off first (even though we had been practically at my destination.)

At the other end of the day, it did indeed take two and a half hours to get home because he drove on Route 9 to the Natick entrance and also because he took a different passenger to East Springfield before bringing me home. When we pulled into my driveway around 9:15 p.m. and I was fishing around behind my seat for a piece of paper that I had dropped, he barked, "What are you doing?" and wouldn't help move the seat that had gotten stuck. Then he thrust a half-filled water bottle into my face and ordered, "Take your garbage." When I said it wasn't mine, he pointed to a bottle cap that was on the floor and said, "Pick that up. I am not your maid."

The last part of the drive in the dark night alone with this psycho made me feel so unsafe and therefore tense that when I got in the house and made a grilled cheese and tomato sandwich and put it on a plate, I knocked it all onto the floor. The plate broke, and the sandwich landed face down. Katie, who had come to South Hadley to see a friend, walked in the door and found me standing in the kitchen with the broken plate pieces in my hand.

She cleaned up the mess. I put my head on her shoulder and she patted my back. Then I made another sandwich, watched part of the Republican debate but couldn't take much,  and then settled in to watch The Daily Show finale and cried a little more.

The next day I called the transportation office again and added to my complaint. I also located the Prevalent website and wrote a negative review saying what had happened. It was hard to get the episode out of my head.

Not ready to give up the house

View from front of my house

From time to time and more and more, people ask me when I'm going to sell my house.

It's OK to ask; it's obviously a reasonable question. But I could do without this unsolicited advice that I've also heard: "You should sell the house and buy a condo."

My answers include, "I'm not ready," "I don't want to talk about that now," and "When I stop having nightmares that I've sold the house and am looking at it from the outside in and wishing that I still lived there and realizing that I made a big mistake."

I wonder if that nightmare ever goes away

Recently a friend told me that he was dreading it, that he cried when he left...and that he never looked back.

So you never know.

I was thinking about this when doing battle with the weeds in my front garden this morning and pondering the existential question: "Why do weeds grow so quickly?"

Any semblance that I had of my New York manicure was gone by the time I finished. I start out wearing gloves, but I could only really dislodge the roots by digging my fingers into the ground. I did the front row first (back-asswords) and then did my best to hop over and balance in the back without toppling over.

I remembered when I wasn't even allowed to weed due to fungus lurking in the dirt. Pulling out a weed is the probable culprit in the aspergillus that I got back in 2003, necessitating lung surgery to remove a fungal ball before I could get my first transplant.

I remembered that towards the end of the last year of restrictions after my fourth transplant six years ago, I walked into the garden to help Katie as she pulled out weeds. She got upset with me and said I better call Melissa. I did that and Melissa said to get out of there right now.

Well, being immune suppressed was an excuse to not do it, but I am happier where I am.

Bending over did, however, hurt my back, and as I leaned against the house to rest and looked out at the scene that is pictured with this post, I thought, "Definitely not ready."

Thankful my prediction didn't come true

Happy to hold Nell

My sister just reminded me of the day a dozen years ago when I had had my Dana-Farber intake appointment and I was standing outside the Cheesecake Factory where she and Korby and Kit, the two friends who had brought me to Boston, were getting a table.

I was on the phone with Jim, in a crouch, sobbing and saying, "I'm never going to see my grandchildren."

Although I said that many times over, the first one stands out because it was all such a shock. One day I was a busy single mother of three, running around like crazy, holding down a full-time newspaper job, playing on a tennis team and running races like the Saint Patrick's Road Race that I had recently completed and during which my fatigue had sent me to the doctor and led to my leukemia diagnosis, and the next day I was a cancer patient facing three rounds of chemotherapy, multiple hospitalizations and a bone marrow transplant.

The time that I remember most clearly occurred later – eight years ago – after my last relapse when, while Diane drove me to the emergency room on a snowy December night and I knew I was facing stronger chemotherapy than ever and my fourth bone marrow transplant, I slid down in the passenger seat and said, once again, "I'm never going to see my grandchildren, I'm never going to see my grandchildren."

And there I was yesterday in the maternity section of Norwalk Hospital holding my two-day-old granddaughter in my arms, feeling the warmth of her body, finding it hard to believe that my baby was now a father, and loving how happy Ben and Meghan looked.

Thanks to Dana-Farber, to The Gift of Life Bone Marrow Foundation that found me my donor, and to that donor, Denise, and to so many others, my prediction did not come true.

How happy I am to have been proven wrong!