Thursday, July 23, 2015

Report from Boston, the mostly good and the bad

Dr. Alyea took one look at me on my visit Monday and said, "You're getting a lot of sun."

This was not a compliment as in the old days of, "You have such a great tan."

He said I will keep my dermatologists busy if I don't protect my skin better and suggested that if I play tennis outside I cover up from head to toe and wear the highest possible level of sunscreen.

So yesterday at George's clinic at the Canoe Club I wore a sun protection long-sleeved shirt and exercise pants to below my knees plus my usual baseball cap. I got so sweaty that I created my own little sauna. If I had wanted to lose weight, this would have done the trick. Also I went later than usual, and I probably should have left early, but the end is where we finally get to play after all of our drills and it is difficult to leave then.

Otherwise my visit was good. Dr. Alyea said that since my skin has improved I can reduce my ECP from twice a week to once a week...for 12 more weeks!

The Ride continues to be a problem. I filed a complaint yesterday, but I don't know if that will help.
I use two services, Veterans to Diane's in Newton and National Express to Margaret's in Needham.

It would take too long to go through the whole fiasco, but I will just say that the right service, National Express, came to Margaret's – where I was staying – at 6 a.m., the wrong time for a ride that I had canceled because the physician's assistant told me there would be no benefit in coming the second day. I had rebooked for 11 a.m.

The wrong service, Veteran's, went to Diane's at the right time, 11 a.m., to get me back to Dana-Farber for my noon ride home, and they don't go to Needham, so I was stuck.

Extremely frustrated and frankly near tears, I called a dispatcher who said she saw no record of the later ride that I had requested and she would look into it. But she never called back. For all they cared, I could still be sitting there, as could a truly disabled person who uses the service.

Luckily Margaret's husband Nick was there to drove me in.

I felt bad about inconveniencing him, but we had a nice chat on the way to Dana-Farber, and the driver taking me back to South Hadley was on time, and we had an interesting talk about his stage of life, which is that of a young person like many of the others doing the driving to make some money while they figure out what to do. We talked about the pros and cons of various trades, such as electrician. The time passed, and I took a little nap.

The driver last week was a hoot. He asked what he could do on his own in the area after dropping me off, and I suggested Northampton and told him how to get there.

Minutes later the face of a young woman appeared on his cell phone.

"Get off Tinder," I said from the back seat.

"How do you know about Tinder?" he asked.

I told him that even though I am old(er), I still know a thing or two.

Wednesday, July 15, 2015

Of waterworks, Gatorade spills and a Cape escape

You may or may not have noticed that the blog has taken a break.

This is due to a series of technical and emotional difficulties that began last week when I watched Joe pack up to move out after four years of living at home.

It is ALL GOOD, and he is not going far, just to Fairfield County, and I knew it would come shortly after his master's graduation from UMass, but still watching it happen underlined what I already knew – that he has taken care of me as much as I have taken care of him, literally picking me up off the ground and going with me to the emergency room on multiple occasions.

The waterworks started with something that I can laugh about and cry about at the same time.

Me: "I just bought you your last bag of baby carrots," accompanied by tears.

Joe: "Mom, you can buy them for me again."

But once I started, it was hard to stop, and I didn't want him to see me, but he did, and we had a good conversation where we brought up the theme from the movie we had both just seen, "Inside Out," in which sadness must be accepted as a part of life.

It was well into the afternoon on this moving out day last week when I got a call from a man with an Indian accent who said that he was from Microsoft and he had information about my computer being hacked. He he said he could show me that it was being hacked in Australia and Morocco and I would need to buy a something from him to protect against these hackers. So I asked him his name and his telephone number and said I would call him back. I forget the whole number, but it was area code 302 something, and as soon as I put it in google I saw that it was a scam from various numbers in the 302 area code offering debt relief, anti-virus protection, and all sorts of other things...for a price.

(The comments that came up after I put the number in provided comic relief, such as one person reporting that he said to the caller, "Your mother would be ashamed of you," and another saying, "Maybe Donald Trump can stop these calls, because nobody else can.'")

Absorbed by this, and not paying attention to anything else, I knocked a bottle of Gatorade mixed with water onto my Macbook Air, ruining basically everything but the keyboard and frame.

Sunset on the bay
In a panic I called Apple and learned that the genius bar takes walk-ins on a first come, first served basis, so the next day I was the first one there at 10 a.m. The geniuses must also be trained in counseling, because the one who helped me said he sees it frequently, with people watering their plants over their computer or spilling coffee.

I left it there and signed off on paying an arm and a leg to get a new hard drive. Luckily I had all my important work on a flash drive.

The same day I met Katie in Boston after my photopheresis, and just seeing her brightened my mood.  From there we took off for four nights at the Cape, staying in a cute bed and breakfast in Eastham. The sun- and fun-filled days included the ocean and the bay, the pond and the bike path (three successful rides!), Provincetown dinner and stroll, and sunset at Sunken Meadow Beach, where the small group of spectators applaud as the globe sinks behind the horizon.

Then, alas, it was back home Monday to deal with the mess that I left behind in my whirlwind departure and to unpack the bags that I had accumulated over the mini-vacation and to get used to the Joe-less house.

That night I played in a match in Holyoke with the summer team I am on, the Paper Dolls. Despite the heat and humidity, it was great tennis.

You can't be sad all the time.

Friday, July 3, 2015

The ride getting smoother

My driver was super nice yesterday, waiting for me with no complaint even though once again the ECP ran longer than expected.

When the nurse tells me I am in photoactivate, it's a sign that I'm near the end, kind of like when you are approaching the Palmer exit on the MassPike on the ride west from Boston and you know you're near to home. Photoactivate – the part where my while cells get a sunburn – comes after six cycles of removing and returning blood and collecting white cells each time. It's not quite over then because they still have to take your blood pressure and remove the needle and wrap your arm up.

In any case, the nice driver took me to Brighton to a great tapas restaurant, Tasca, making me feel like we were back in Spain, except that the hour, around 7 p.m., would have been unheard of in Spain, where if you got to a restaurant before 9 it was unfashionably early.

By now you have guessed that the driver was Katie, and I am so glad she's back in Massachusetts. She took me to Diane and David's house, where I spent the night and then got picked up by The Ride to go to Dana-Farber so the prescription transport car service could take me back home, a little hop  skipping and jumping because they will only deliver me to and pick me up from Dana-Farber.

I was afraid it was going to be another case of a no-show because at 9:30 a.m. the service that was supposed to pick me up was nowhere to be seen. Every time I called the main office I pressed everything they said only to get disconnected at the end. About 10 a.m. the driver finally arrived,  saying he was lost because many of them from the various services can't figure out that the entrance to 450 Brookline Ave. is actually on Jimmy Fund Way even though the signs point that way. Also he said he called me about 10 times, but he had called my home number even though I told them repeatedly told them to use my cell. I need to take the home number off. As some people in the younger generation might say, "Serves you right for keeping your landline."

Things are moving along well in several directions. I was waiting to hear from The Ride eligibility center to see if I could continue using its services even though standing up and sitting down, turning in a circle and walking across the parking lot was so easy I feared they would kick me off. When I got the large envelope I knew it was good news, just as it is in college admissions. They cleared me through 2018. I hope I don't have to use it that long.

I am only scheduled for procedures through the end of July. At that point Dr. Alyea will re-evaluate my skin to determine if I can decrease my visits. I am happy to report that I have noticed some changes. I saw the areas of hardened and thickened skin and the swelling in my hands, but I didn't feel any impediment to movement until I saw the improvement and realized the effects in hindsight.

I have mostly seen this in yoga. Sometimes I feel so inflexible that I want to say, "Oil me." It is mostly my joints, but I see now that my skin has played a role. I told my yoga teacher, Justine, that my movements feel more fluid, and she said she noticed right away that when she did an adjustment to a posture my arms and shoulders had much more give.

Despite all the hassles, something that I didn't want to do has turned out to be for the best.

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.