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 could...how 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.

So...you 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. www.mobilesauna.us. 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.