Monday, June 29, 2015

Prescription du jour: salty snacks

I have been having the worst hand cramps, the kind that is more common in a toe, where the remedy is usually just to stand up and put some pressure on your foot.

It usually happens when I am at the keyboard. My thumb will actually get frozen in a backbend while other fingers can get stuck out straight or in a claw. Naturally I have to stop typing. It also happened when I was at a graduation party and I yelped and said to the person I was talking to, "Look at my thumb doing a backbend," and that might have seemed a little weird.

I looked it up and saw that the causes can include low sodium, magnesium or potassium or also dehydration. Joe Graedon at The People's Pharmacy said sufferers swear by holding a bar of soap, or, if the cramp is in your feet, putting soap at the bottom of your mattress. This did not seem up my alley. I did see something useful, which is exercising your fingers by "letting your fingers do the walking" on a surface or pressing your hand on a table or on the wall.

I had forgotten to ask Melissa because other matters had taken priority, but I finally thought to write her and she said that what I had read is true: The problem can be caused by an imbalance in electrolytes.

Last week when they tested my blood counts at ECP they added a test for electrolytes. It turns out that my sodium is low. This can happen due to a shifting in your blood during photopheresis. Melissa said to eat more salty snacks (ha I just typed salty snakes) and to take salt tablets. I had had this problem years ago and found that it is not so easy to find Thermotabs, the buffered salt tablets that I need. The Big Y pharmacy had ordered them for me in the past. I called on Friday and they said they would get some in for me today.

In the meantime I went to two cookouts and got my fill of hot dogs. Also indulged in potato chips, Cheesitz and other fun stuff...which all made me so thirsty that the other night I could not stop eating watermelon. This morning, I ate cottage cheese, which is very high in sodium. Will get the salt tabs later and cut back on the snacks.

Sugar is more my downfall than salt, and I would rather have had the prescription be to eat more cookies or some more of Evelyn's coffee cake.

Sunday, June 28, 2015

One year later, remembering, and missing, a friend

Adirondack Mountains, February, 2007
It's hard to believe that it has been a year since my friend Patricia Jempty's death.

If you read her blog, you knew her as PJ, and if you want to go back, it's still there at The Plog. The last post is a beautiful tribute by her husband, Marty.

It seemed like one minute we were making a game about comparing the side effects of our transplants: the most teeth lost (me, 11 to 3); the worst GVHD (her); skin cancer surgery, both; multiple bone marrow transplants, me (four to two); the spectacular falls, a tie, with us both running a race, falling down, and getting back up. Although hers was the most impressive. When I fell at mile six of the 10-mile Broad Street Run in Philadelphia, I took an ambulance to the finish. When she ran the New York Marathon for Team in Training, she went a longer distance, tripped over a curb and fell, then stopped at a friend's house for brunch and walked black and blue the rest of the way Marty.

She started her blog first, and when she found mine, she wrote that we were dopplegangers: same disease (acute myeloid leukemia), same cancer center (Dana-Farber) similar treatment, three children, both runners, both in love with our dogs, both appreciating the good strong coffee that we drank when we met. Nobody could understand us the way we understood each other, except maybe Ann, who, sadly, also died last year.

It was just by a stroke of luck that I got the strong cells of my donor, Denise, and she got an anonymous donor who couldn't fight off the disease.

Thinking of the Jempty family on this yahrzeit, the anniversary of a death in the Jewish tradition, and missing my friend.

Thursday, June 25, 2015

Stand up, sit down

It pays to know people in the right places, in this instance Hannah from Dana-Farber resources, who made one call to correct my transportation problem and arranged for me to leave The Ride headquarters in Charlestown at 2 instead of 2:50 p.m. to get to my 3 p.m. appointment at the Kraft Donor Center, where I am now waiting for my machine to prime because the person I told that I was coming in didn't pass the info back to the nurses.

I don't mind waiting because I am gleefully watching CNN's coverage of the Supreme Court decision upholding the Affordable Care Act.

My interview at the eligibility center was strange. People in wheelchairs and with canes and crutches were in the waiting room to confirm the disability qualifying them to use the paratransit program. One woman was so overweight that it looked like she could barely move. I felt so bad for these people and thought about how at one point some of them were flawless little babies.

An episode of 'The Golden Girls" played on the TV. One of them had a bubble in her chest. The others feared that she might die. But they said something funny, and laughter ensued.

And then there was me.

My interviewer, a nice man, came out and walked me to an office in the back. He asked when was the last time I used public transportation, if I ever felt dizzy or faint, did I ever fall and how was my balance and memory.

I gave him my medication list and Dr. Alyea's number. I explained as much of the whole megillah as I I had a bone marrow transplant six years ago and how I have GVHD of the skin and how after three hours of ECP and with bags to lug I can't take the T to Diane's or Margaret's and I how I can't drive because I don't have my car. And how at 6 a.m. or earlier the next day it would be difficult to do the reverse. And how if The Ride fails to reauthorize me the house of cards will collapse.

He asked me to stand up and sit down without using my hands, close my eyes for 10 seconds and report if I felt dizzy, and take a little walk in the parking lot and tell him if I needed to rest. Then he got me cup of water. He said not to worry if it was too easy; he seemed to realize it is a circumstantial disability. I will get a letter in the next week confirming or denying my need to use The Ride.

Wednesday, June 24, 2015

Transportation tribulations, cont.

Tomorrow I need to go to The Ride headquarters in Charlestown to get reauthorized for continued use of the service. Tomorrow's date on my calendar has arrows going in a square to chart my pickups and departures. Here is the description of the population that The Ride serves.

THE RIDE paratransit service provides door-to door, shared-ride transportation to eligible people who cannot use fixed-route transit (bus, subway, trolley) all or some of the time because of a physical, cognitive or mental disability. THE RIDE is operated by the Massachusetts Bay Transportation Authority (MBTA) in compliance with the federal Americans with Disabilities Act (ADA).
I'm not sure how I fit into this category. Do I need to bring the cane that I still have from the bad old days when I could barely walk?
Well if Hannah from the Dana-Farber resources office got me qualified to begin with, I assume that all I need to do is supply my doctor's contact info and explain the situation: two times a week for photopheresis, a problem with driving myself to and from Boston because I get so tired, resulting in not having a car to get to my overnight and being too tired (and dragging a suitcase) to use the T.

Frankly I didn't even know I had to the headquarters. I realized I had to reauthorize before June 5, but I was surprised when I called the day before and the call taker asked me when I was coming in for my appointment. I said I couldn't do it, I was in South Hadley, and she said, "Well you can't use The Ride after tomorrow."

After talking to Hannah, I called back and got a nicer woman who said she would give me an extension and get me a ride to the appointment. It went like so: pickup in South Hadley at 9:30 a.m. from the prescription transport service that takes me to Boston and brings me back, then The Ride picks me up at Dana-Farber, takes me to Charlestown for a 1 to 2 p.m. interview, and then brings me back to Dana-Farber for my 3 p.m. photopheresis.

When I called The Ride to confirm, the person who answered said she had no record of any of these trips. She said to call headquarters, which I did without getting through to a real person. After none of the options, 1, 2, or 3 were applicable, I pressed 0 and the annoying lady said in her too-cheerful voice, "Goodbye."

Hanna called for me and said it was all straightened out. I'd say this took about an hour when I could have been doing something other than screaming at dial tones when I got kicked out. Imagine the frustration of someone who is mentally in need of the service. get a message the night before with your pickup times. Last night I got mine: 12:15 p.m. pickup at Dana-Farber to get to Charlestown at 1, which is fine, and 2:50 p.m. to get to Dana-Farber, which is not fine, seeing as how it takes 20 minutes without traffic.

When I called National Express, the cab service that scheduled these trips, a Kafka-esque conversation ensued. The man I talked to said The Ride had put me in for a 2:30 pickup, and the closest available was 2:50. I have figured out that you can't specify your pickup time, just your delivery time, and I said could he please work it backwards and change the time so I can get back to 450 Brookline Ave. at 3.

No, he could not, only someone from the Ride headquarters can do it because they set it up. Apparently they make the rule so they can break it. He said to call them in the morning, which will be difficult, because by the time I get through it will be time to get picked up. And if it won't work out and I have to cancel the appointment, I don't want to be heading to Boston and find out I have more than three hours to kill before ECP.

I emailed Hannah to tell her of this new development and hopefully she can work it out on my behalf in the morning.

Making the arrangements is more draining that having your blood removed and recycled for three hours at a time.

Tuesday, June 23, 2015

Ride time is story time

Who knew that my rides to and from Boston and around town would unlock so many stories?

Yesterday's cheerful driver who took me from Newton to Dana-Farber balanced last week's rude one. I forgot his name, but let's say it was John, so it went like this. "Hello, I'm John and I'm still old and still not rich." We picked up a woman with cerebral palsy and took her to the sheltered workshop where she and others make crafts to sell in a storefront. The driver said they do beautiful weaving and other things and he and his wife do all their Christmas shopping there.

Since I had gone to the Cape and not straight home after my treatment on Friday, I had to get back to Dana-Farber for my pickup because those rides will only take me to and from Dana-Farber. It took me a while but I think I have mastered the nuances. You tell them what time you would like to be somewhere and then they work it back to your pickup, giving you a call the day or night before to tell you when they're coming.

Last week my driver home from Boston said he was a clown and a juggler in Russia. He said he was born dead (i.e. the umbilical cord was wrapped around his neck), but then revived and nearly killed by traditional medicine when he became sick again later. His mother researched natural remedies and to this day that is all that he uses. Seeing that I had come out of Dana-Farber, he said I should really take an extract from graviola tree fruit, which he said has been known to cure cancer. Furthermore he can put essence of that and other natural healing remedies in his mobile sauna that he drives throughout the state. He offered to drive it out to me, but I demurred.

Well I happened to have already heard about graviola and had come across warnings when I looked it up. I said, "No thanks, I'm fine and I'm not going to put anything else in my body. He gave me his card and asked me to show it around.

I've always had male drivers, but my driver home yesterday was a beautiful young woman who said her parents had recently sent her to Quincy (where she knew someone) out of fear for her safety around their home in battle-torn Eastern Ukraine. She earned a bachelor's degree in philology in Ukraine and would like to return to school in the U.S. but is not sure what she'll study.

She said maybe Boston University but she can't afford it, and that's why she's driving patients like me to their appointments. I told her she she should really apply to Harvard; they would love her and they give full scholarships to qualified students in need. I found the link to Harvard Scholarships on my iPhone and sent it to her at the address she gave me.

I asked her to let me know when she gets in.

She gave me some delicious carmel candies that she gets at a Russian grocery store near her.

Sunday, June 21, 2015

Fun and flowers on Wellfleet weekend

My sister is a container gardener extraordinaire.

You could just sit on their deck in their treehouse in Wellfleet and not do anything else but look at all her flowers.

However, we got a lot of things into a day and a half. Dinner at the Beachcomber, lunch and ice cream at the dock, walk along the bay, sitting/walking on the beach, Wellfleet oysters, cookout with Diane and David, and even swimming in Gull Pond (Katie and Alex swimming; Diane and I watching).

My only problem is that I still don't know what is up with my stomach. One day I was fine, and the other I was up at night. I have been emailing Melissa about it and she said she'd check with Dr. Alyea to see what he wants to do.

At least I have remembered to drink Gatorade. I don't much like the taste, so I water it down. When my friends and I were in New York and I was sick to my stomach on and off the whole time, I thought I was doing the right thing by drinking lots of water. Emily realized on the last day that I should have been drinking Gatorade. She ran and got me one just as we were about to walk along the Brooklyn Bridge. I perked right up.

The weather was perfect the past two days. Today it is cloudy, so we might take a walk and then head back early.

One of the first things I plan to do when I get back home is to buy more flowers and cram them in my two barrels. I asked Diane how she did it, and she said she just channeled our mother, who said to cram the plants in. I will get some more plants and bring our mother with me.

The little wagon in one photo  came from Atlantic Beach. I think we put toys in them and took them down to the beach.

Friday, June 19, 2015

Of needles and nasty drivers

All was well yesterday at my new favorite destination, The Kraft Blood Donor Center, except for the last 15 minutes or so after I had gotten up to go to the bathroom and the placement of the needle must have gotten jiggled a little.

As previously noted, I usually have to get up once. The nurse puts a board under my arm so that I will not bend it. Nothing terrible happened but the pain was pretty bad. A trainer from Epic (the new computer system) was done for the day because they were backed up and I was the last patient. He entertained me with tales of living in Abu Dhabi, where the king gives every citizen 1,000 dirham for each boy baby and 500 for each girl, creating a society where the living is easy but no one wants to work too hard.

I was l0 minutes late getting downstairs due to the backup upstairs. My ride from Veterans taxi was not in front. The dispatcher called just when I was about to call and said the driver was actually on Brookline Avenue, not at the entrance where I was standing on Jimmy Fund Way, where the pickups and drop offs usually are.

The driver got out and, I am not exaggerating, SCREAMED at me, "You're late, you're late, you're supposed to be on time!" Then he said he had been waiting just up ahead and screamed again, "Did you not see me?" After which he changed his story and said he was actually driving around the block. I cannot believe that a driver picking someone up from Dana-Farber yells at the patient for being late. I am not sure if it will make a difference, but a complaint with The Ride is due.

We made two stops at housing complexes. (Where a driver would be justified in pointing out someone's tardiness...but not screaming.) First, to pick up a blind gentleman who sat in the front.
Then to pick up a woman who was so fat that she could not buckle up her seatbelt. The driver had to get out and help her. Her stuff spilled over onto my lap and I asked if she would mind moving it a little.

The driver said everyone should open the windows. The man in front opened his all the way, which caused my hair to blow around like crazy in the back. I asked him to close it a little and he asked why we were opening them in the first place.

I knew why. The woman reeked of smoke. The driver said, "Because it smells like smoke."

I said why didn't we just all open our windows a crack.

This was agreed upon and nothing else was said.

It was nice to have a glass of wine with Diane and eat some good chicken and grilled vegetables that David had previously prepared. I'm afraid that Diane got an earful.

Thursday, June 18, 2015

Wellfleet on my mind

I get to cancel two of my rides this weekend because an alternative driver has driven all the way from Minneapolis...and it is...Katie Doody!

She and her boyfriend are going to pick me up at Dana-Farber tomorrow after my early morning photopheresis session, and then we will drive to Wellfleet to Diane and David's. We'll spend the weekend with them, and then Katie will drive me back home on Sunday before going back to the Boston area for the summer.

We have two fun things planned: Shakespeare in the Park, with Sam Waterston and Jesse Tyler Ferguson in "The Tempest," and also "Hamilton" on Broadway.

When I googled Shakespeare in the Park to check the dates I came upon some mixed reviews, but I am not concerned. The scene's the thing, both the setting of the plays outdoors in the park's Delacorte Theater and also waiting in the line for hours to get your free tickets, which at first sounded daunting but which has turned out to be almost as entertaining as the play.

Also unfortunately, after 10 days of antibiotics and continued use of a steroid, my stomach had gotten better but now has acted up again. I am waiting to hear from Melissa about what they want me to do. It can't be too bad, though, because I went to George's clinic yesterday, getting there at 9 and staying until noon.

My daughter is so much more adventurous than I ever was. She did her junior year abroad in Spain while I did mine in Connecticut, at Wesleyan University. The idea of going abroad wasn't promoted as much in those days. I can't complain because I have traveled some, and also, if I hadn't done the Twelve College Exchange, I wouldn't have met my Wesleyan friends.

I'll need to do some work in Wellfleet. I am in a feast phase of the "feast or famine" freelance business. I can't complain about that either.

Tuesday, June 16, 2015

Of normal platelets and nightmares that didn't come true

Facebook can be a pain in the butt, and checking it can be an excuse for procrastination, and maybe we wonder why does everyone's garden look better than mine, and can't we just hear our kids saying, "Those parents and their addiction!"

But it is great when you need to call out for help, which is just what I got the other day when I awoke from a nightmare and posted this:

"Checking in with my nurse practitioner today after photopheresis. Should be fine. Horrible nightmares, though. The nurses wouldn’t let me leave my bed while I waited for test results and the arrival of a pill. I couldn’t get home to my kids. I had stories due, but I couldn’t get back to work. I tried to call my editor but she had left for the day. I had walked into a door and broken my glasses and could not see. The nurses said I had lesions on my lung and a couple of other spots. I would need to find another new specialist. I wonder, does it ever end?"

Thank you everyone for the support that poured in. I felt better and better as I read the good thoughts. Obviously none of it happened, although the fact remains that I still have a lot to hold in my head. But to quote my father, I can't complain, especially when thinking of my dear friend Patricia, aka PJ, who died a year ago this month from the same horrible disease.

Almost by accident, I learned some exciting news. Each week of pheresis you get a CBC, and when my nurse Esther had said that my hematocrit was good enough for the procedure – 31.2 – she also said, "Platelets, 188." I had her repeat it. Yes, within the normal range for the first time since my transplant. Considering that at one time that they were down to two or three, that is a big deal. Melissa explained that when graft vs. host improves, your counts go up too.  (Normal is 150 to 450, or 150,000 to 450,000/mcL.)

The logistics of the weekend worked themselves out in an interesting way. After Friday's pheresis, my former boyfriend Rook and his lovely wife Annie picked me up at Dana-Farber so we could have some fun before I was due that evening at Margaret's house for her son Natty's high school graduation party. We went shopping at REI, which we don't have around here, and then went out for lunch and a walk before they dropped me at Margaret's. It tickles me that since Annie liked my blue Beverly Bloomberg watch, Rook gave me the money to get one for her and send it to him to give her for her birthday. So, buying a birthday present for your former boyfriend's wife. It is nice when people cycle back in.

"My" room at Margaret's was taken by visiting relatives, so I slept nearby at her brother Mark's house. Then back to Margaret's for brunch, picked up by The Ride to go back to Dana-Farber, and then getting my other ride back home for a long nap in the car.

Thursday, June 11, 2015

Ramblings and peregrinations

In my dream, my father sat in our living room reading "Game of Thrones." He had almost finished the big book, and I was impressed. I wished that he could get out of the apartment and get together with some other senior citizens, maybe joining a book club to discuss what he was reading. He wasn't up to it, but he didn't mind. He was happy to be retired.

(BTW I don't even watch "Game of Thrones." But it got in my mind yesterday when I read a criticism claiming it has strayed too far from the book.)

In actuality, I had pulled out his copy of "Ulysses" and showed Joe the pages and pages of annotations in that scrawl that brings him back to life. After college at Rutgers, he had to go to work, but our "walking dictionary" had the temperament and motivation for a Ph.D. After he retired, he got his masters at City University. I had to take a course at Vassar to understand 'Ulysses," but he did it on his own.

I was looking at "Ulysses" because an email from the Literacy Project reminded me that Bloomsday is coming up on Tuesday, June 16, to commemorate the day in 1904 in which James Joyce's protagonist, Leopold Bloom, peregrinates through Dublin.

The Literacy Project (where I tutor), is celebrating with a benefit event at the Arts Block in Greenfield, with readings, music and prizes for the best Edwardian costume. I think I might go.
Themes and motifs: paternity, love, death, separateness
of Bloom and Stephen due to being Jewish.

Back in my dream, my mother in heaven, not to be ignored, sent quarters (for the parking meters) onto the streets of New York where I was walking. When I bent down to scoop them up, someone said I was greedy and was taking too many.

I said that picking up change dates back to my childhood when I would see pennies in the subway grates in front of my mother's jewelry store ("The Store" to us) on Lexington Avenue  and try to pick them up with gum attached to long poles that my mother used to get jewelry down from the top shelves. I remember wishing I could get to that change, but did I ever really try?

I have been trying to go to bed earlier to get more sleep, but then I just wake up earlier. (Sign of getting old?) Also wondering why I could find only one black sandal to go with the outfit that I plan to wear to Natty's high school graduation party tomorrow in Needham. Cleaning out my closet to look for it seemed too daunting, but I did it at the crack of dawn today, serenaded by the birds waking up. Not only did I find the shoe, but I also found "lost" presents from my 58th birthday: a $50 gift certificate to Dick's, a bag for my yoga mat, and some sweet cards from my children. Better two years late than never.

Figuring out the logistics in my own peregrinations have revealed a silver lining in my trips to Boston for photopheresis: possibly staving off Alzheimers by exercising my mind. Places I will go, using three different car services plus a ride from Margaret and one from Rook and Annie: Dana-Farber, Diane and David's, out to lunch and for a walk with Rook and Annie, Margaret and Nick's, Margaret's brother's house (to spend the night after Natty's party because "my" room is taken), back to Margaret's for breakfast and then back to Dana-Farber on Saturday because my transport takes me there and picks me up from there.

Also, the Kraft Blood Donor Center midway on the bridge from the Yawkey Center and Brigham and Women's, today and Friday, then upstairs on Friday for an appointment with Melissa to discuss the latest: In addition to colitis, I also have a touch of GVHD after all, but I might be able to avoid upping my prednisone while we wait and see how I do on my three new meds.

Tuesday, June 9, 2015


Antibiotics are overprescribed,  but they work wonders when you need them.

The two that I am taking quickly reduced my intestinal symptoms, although one of the pills caused terrible heartburn.

This falls into the category of fixing one problem and creating another.

My pharmacist blamed the Flagyl (metronidazole); I could take it with milk or yogurt, although calcium decreases the absorption of Cipro (ciprofloxacin). The label on the Cipro says do not take antacids, iron, or vitamin/mineral supplements within 6 hours before or 2 hours after the medication. They all say to take with plenty of water. Since I was up twice at night from following that advice, I took the Flagyl with some yogurt before bed and the Cipro at 4 a.m. Another complication is taking five tabs of Exjade on an empty stomach and not eating for 30 minutes to keep working on my ferritin reduction.

My master's degree is only in journalism. You need a different type of degree to keep up with all of this. For a few minutes this morning I stood looking at the three new bottles, unsure which to take when.

A couple of Zantac helped, but of course that and Prilosec, which I got off of because of the side effects, are not good for your system either.

 I came upon some natural remedies while doing a google search for Flagyl and acid reflux and found all of these: aloe juice, slippery elm, romaine lettuce, fennel tea and ginger root. I found already had green ginger tea in my closet so I am drinking that. (Would rather be drinking coffee!) Today I bought a ginger root. Maybe mix it with the mint from my garden?

So, nix the dairy and try some of these. Also drink a ton of water. Skip the multivitamin and the calcium supplement. Worry about my bones later.

Licorice is also on the list, but I guess Twizzlers do not count even though I could justify a little something extra because I have lost five pounds in all of this.

I am on Melissa's schedule for a week from Friday, but I am trying to switch the appointment to this Friday after the ECP. Hopefully she will be able to help figure me figure out the pill-taking challenge.

Saturday, June 6, 2015

Diagnosed and medicated, finally

Morning meds
I learned yesterday that I have colitis, not a flareup of intestinal graft vs. host, and when I got home from my photopheresis yesterday, I celebrated with a walk/run.

Why celebrate? Why run when I said I had given it up?

Well, I'm happy because I got a diagnosis and because if it was GVHD that would have meant increasing the prednisone that we have worked so hard to lower to just 1 mg. daily now to treat the GVHD of the liver. I am taking two antibiotics and a nonabsorbable steroid, meaning it will not spread throughout my system.

As for the little walk/run, I needed to get some exercise after spending three hours in the car and three getting treatment. I didn't have the energy to go swimming, and since running has for a long time been my fall-back, I decided to give it a try, figuring if my toe hurt again I would just make it a walk. It worked out well. Now I still need to find a better pair of sneakers.

Esther, my nurse yesterday at the Kraft Blood Donor, said she had some presents for me. One was a lidocaine cream to rub on the area where the needle would go into my arm, and the other was a shot of lidocaine before the needle went in. She had heard about the pain that I had last week, and she didn't want me to go through that again. She also gave me a small tube to take home with me so I can put the cream on next time 20 minutes before the procedure.

I am happy to be making some new nurse friends. I was indirectly compensated for my pain and suffering at the endoscopy center last week. The nurses shared the pizza and cookies that someone had sent down to compensate them for their pain and suffering on the date that the new Epic system was launched.

Pain and suffering – her words, not mine – are of course all relative in this messed up world, but she said that they felt their own version when no computer trainer was in sight in a room full of nurses. But they were joking about it, taking it in stride, which is all that you can do.

I wouldn't have liked to be the public relations person who wrote about the switch to the Epic system last Saturday.

"Despite a fell small bumps – an issue early in the day with the Command Center Service Desk, which was resolved quickly, and some user access issues – the implementation on Saturday was remarkably smooth," according to the lead story in Dana-Farber's Inside the Institute.

Esther told me she had heard about a lot of problems similar to mine.

Oh well, at least we got pizza and cookies. Admittedly I took a chance in eating it, but it went down OK.

Wednesday, June 3, 2015

Appreciation day

Afternoon light, with apologies to the real photogs
After yesterday's post full 'o gripes, I thought I would write something more pleasant today.

It was perfect spring weather – 71 degrees the last time I looked – and not so hot or so rainy as it has been. I imagine everyone around here perked up too.

It occurred to me about half-way through the day that for the first time in a long while my stomach hasn't bothered me. Maybe the procedure scared whatever it is away. I doubt it but still I will take actually feeling good for most of the day.

I went to George's clinic late and left early, wanting to be in that beautiful setting with all the fun players even though I was pokey and probably still had some anesthesia in my system. I knew I wasn't myself when I volunteered to play "triples" when the option came up for six people to do that and four to play doubles. Afterwards I remembered to get some Gatorade instead of just drinking water; that helped me from dragging when we walked over the Brooklyn Bridge.

Some friends had talked about reading David McCullough's book about the building of the bridge, and, inspired by our walk, I went to the library and got it. If I don't read all 608 pages, I can use the book for weight lifting.

During an errand that took me down "asparagus row" on Route 47, I passed a farm that was selling strawberries too. The first local strawberries always make me happy, even the way they smell. I bought a basket and a bunch of asparagus, bringing some to Jim Bloom when I picked up Maddie, who had stayed overnight because Joe and I got home so late after the drawn-out visit to Brigham and Women's Hospital.

When in New York like I was this past weekend, I feel at home (and sometimes wish I still lived there) but when in Western Massachusetts on a day like today, smelling the strawberries or walking on my lawn or playing on clay courts next to the Connecticut River, I say to myself, "You can't do this in New York!"

Tuesday, June 2, 2015

Freezing cold in hospital purgatory

Unhappy camper
Partners $1.2 billion electronic health records system may be seen as a key to the future, but for a patient like myself undergoing a procedure the day after the launch it was a horrible experience.

At least in the endoscopy center at Brigham and Women's Hospital, they did not have nearly enough technical support people to help enter data into computers. Actually I saw only one such person running around between computers while nurses clustered around trying to enter basic information.

According to a story in the Boston Globe, the new system will allow patients better access to their medical information and will have the potential to reduce medical mistakes. Instead of a separate record at every Partners facility, a patient will have one record throughout the system.

"The investment is part of a gamble by Partners and the US health care system that spending vast amounts on information technology will pay off in better health care at lower costs. Hospitals across the country are investing billions of dollars in electronic medical records systems, pushed by the Obama administration and insurers, which are adopting payment systems that require careful coordination of medical services," according to the story.
Had I known how difficult it would be for a patient, I would have planned my stomach problems at a different time.

For starters, the computer wasn't working at the reception desk, so patients checked in on paper, causing an initial backlog.

When I finally got in the bed where I took the above photo, I waited for more than an hour, shivering under unheated blankets. The nurse had to go through my many meds one by one, including all my dermatological creams, and if I said I was no longer using one, she asked me why and who told me and how long ago. Finally I said, "Just put down that I'm using them all."

"Oh for goodness sakes!" my nurse said more than once while a box would not turn the right color or a comment wouldn't enter.

Me: "Can't I have my Versed now? Can I have an Ativan?"

No, and no.

I didn't cry during treatment for leukemia, but when this nurse went on her lunch hour and no one came back and no one was in sight and I had to go to the bathroom, cry is what I did. Another nurse came over to ask what was wrong, and when I told her she said she would take me into the procedure room but I should be prepared to wait longer because a new set of instructions requiring entry into the computer would also take longer than expected. She was true to her word.

The purpose of all this, as I explained previously, is to do a biopsy to diagnose the cause of and hopefully treat the stomach problems that I have had for more than two weeks. Melissa suspects GVHD; it will take a few days for results.

When the doctor finally came in, the nurse asked me to state my name, birthdate and the procedure being performed. The nurse and her computer helper hadn't totally stopped talking, and I wasn't sure he heard me.

"I hope he's not going to take out my appendix," I said.

Well I survived, but getting out of there took longer than usual because they couldn't get my discharge papers to print.

Thoughts on a pair of earrings

I had the best pair of small blue studs set in a ring of silver. Blue topaz, to be specific, good for tennis and running and good for both every-day wear and dressing up.

They came from Folklorica, a store with beautiful things in Newton where Diane took me. I got a necklace to match.

When I lost one earring on the tennis court, we went back and asked if the designer could make a match. The answer was yes, and in no time I was whole again. This time I got the kind of plastic earring backs that keep them from falling out.

Then the whole pair fell through the cracks in my house. My mother used to say, "A girl can never have too many earrings." I definitely have plenty. I decided to do without.

But I had an idea: The second of my back-to-back ECP sessions last week was at 11 a.m. I asked Diane if she could go with me to Folklorica beforehand. "I woke up in the middle of the night and had a craving to go to Folklorica," I said.

She said sure and proposed that we have breakfast first at the 50s-themed Johnny's Luncheonette. As we walked to Folklorica, she asked, "Did you lose a blue earring again?" I confessed that I had lost both.

They didn't have those earrings, but they had something better!

Little blue hoops with one end that clicks easily into the other. Same stone, same idea. Perfect for someone like me who has trouble connecting one end of a hoop to the other when you have to connect a wire with a small loop behind your ear. (Another sign of older age?)

"The click is so satisfying," the saleswoman said when I tried them on.

When I wore them to New York this weekend, I said to Tami, "I never want to take them off."

"Why would you?" she asked.

I had brought a dangly pair to wear out to dinner, but the new ones morphed from good for a train ride to good for going out.

My one regret about the endoscopy today is that I figured I should remove the earrings. I put them in a special safe place where I can't possibly lose them.

My mother was a jewelry designer, and I am my mother's daughter.

We daughters think about this all the time – "I'm turning into my mother" – and at certain times like this it jumps out at us.

Lucky to have such a problem.

Monday, June 1, 2015

Back to Boston for another procedure

It is impossible for me to stay away from Boston for too long.

Tomorrow I am heading back for an endoscopy to try to pinpoint and treat the cause of the stomach problems that I have had for more than two weeks. Melissa suspects it is a flareup of GVHD.

When I talked to a woman at the endoscopy center at Brigham and Women's Hospital today, she said that because it is a brief procedure, I would not be getting anesthesia. I thought but did not say, "You have got to be kidding." I said, "I'm sure that I got it the last time because I don't remember a thing."

She checked and said I was right. So, no eating after midnight.

The good news is that Joe is driving me and I do not have to depend on the whims of an unknown driver.

In other good news, I went closet shopping and found a pair of shoes I can wear to the Great Futures Gala on Thursday. I wore black lace-up Granny boots with a black skirt over the weekend in New York, and my friends said that although they looked cute, I should get some real shoes to go with the same skirt when I wear it to the Ludlow Country Club this week.

My mother's memorial service in 2006 marked the last and only time I wore the shoes. I never felt like wearing them again. Nor did I feel like giving them away. I guess it's time to give them a try.

Thursday's dinner event is a fundraiser for Springfield's Boys and Girls Club Family Center. The keynote speaker, Ruth E. Carter, is an alumna of the center and a Hollywood costumer designer who I interviewed on set at Mystic Seaport when she designed the costumes for Steven Spielberg's 1997 movie "Amistad."

I would like to say hello to her and also see several people from work who are going. It is a good chance to get dressed up and go out for a good cause.

I hope I feel up to it.