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.

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!

Saturday, August 15, 2015

Feeling better

After Thursday's fiasco, I called MART to see if I can ride alone next time.

The call taker said a doctor needs to write a letter. Melissa said she is on it.

I'm going to give it another chance because it saves so much in terms of wear and tear on the car and, when it is working properly, on me, and also of course saves money. If my first impressions are not good, I will simply drive myself, which is less of a big deal now than when I had to go twice a week. Some nice friends have also offered to driver me.

Also the next day:

I went to a soothing Friday morning yoga class at the Hampshire Regional YMCA in Northampton. I felt good enough to go to the Holyoke Y for a swim later in the afternoon. Summer is a great time to swim inside because most people are outside. Dr. Alyea, who disapproves of me getting so much sun, would be pleased. I have to push myself to go swimming, but once I am in the pool I am able to get into the Zen of it. I also do some water jogging at the end. It is pretty hard, pretty boring, and I don't last too long. You can get a good shoulder opener just by hanging onto the ladder while getting out of the pool.

This coming Thursday I don't have to worry about who is driving me because I'm driving myself and I generally don't act up. I am going to stay at Margaret's in the hopes of the next day seeing my cousin Chaska Potter, who will be in Boston to give support to her friend Sara Bareilles on the opening night (Thursday) of "Waitress," at Boston's American Repertory Theater; Sara wrote the music and lyrics for the show, which, Billboard announced, will head to New York in April 2016.

Katie saw it, said it is fabulous, and predicted it would go to Broadway. I got a few friends together and got us tickets for a date in September, which was a good thing because tickets are selling quickly and they will be twice as much in New York.

Friday, August 14, 2015

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.

Thursday, August 13, 2015

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 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.

Tuesday, August 11, 2015

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.

Sunday, August 9, 2015

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
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.

Saturday, August 8, 2015

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.

Wednesday, August 5, 2015

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."

Saturday, August 1, 2015

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!