Sunday, December 27, 2015

Haunted by relapse nightmares

As the seventh anniversary of my fourth bone marrow transplant approaches, I am haunted by the fear that I will not make it, that it is too good to be true, that something will happen in the next 36 days to hijack it.

Last night I dreamt that I was covered in a rash and that when I went to the doctor he said that meant I had relapsed. He took out needles and syringes. It was going to begin all over again. I was going to lose my hair. I had a 70 percent chance of surviving. I tried to look at this in a positive way, but then I thought of PJ and Ann and Dori who didn't make it, and I thought that could also be me.

It doesn't take much to spark a relapse nightmare these days. For example, I have noticed a couple of my fingernails splitting. I wondered why this was happening because my nails have stayed strong through everything. I dreamt that the nail problem was a sign I was relapsing. In reality, I filed the split ones, and they are OK now.

On Dec. 23, Susan Strother Carrier, who used to blog about leukemia, posted on Facebook, "Just received clean bill of health from oncologist during my annual visit. it's been 8 years since my stem cell transplant. Best present ever!"

I congratulated her and then said my anniversary is coming up too (Jan. 31), but that I am still superstitious about saying it will happen for sure. Maybe that is also the journalist in me. You don't write, "The meeting will take place next Sunday." What if it doesn't? You write, "The meeting is expected to take place..."

I expect that my seventh birthday will arrive. After five years, I was officially cured. Still...

A woman who I met at a party said she had ovarian cancer eight years ago and she does not worry about it coming back. I told her my fear of counting my chickens before they are hatched (sometimes a cliche works). She said she is the opposite. "I don't worry about getting hit by a bus," she said.

Maybe it's because I was hit by a bus so many times. Or because I go to Dana-Farber so often that it is hard to put it out of my mind.

It was good to wake up this morning and realize it was only a dream, but still, difficult to shake it off.

Friday, December 25, 2015

Missing my parents on their Christmas anniversary

My parents were married on Christmas Day, 1947, the day on which my mother could close her jewelry store after the Christmas rush.

She wanted to stay in a fancy hotel before their departure to their Florida honeymoon the next day, but he insisted that they stay in the hotel above Penn Station, saying that due to the coming storm, they would not otherwise get out. She wasn't happy about it, but she relented.

The next day, they woke up to a city blanketed in snow: the historic blizzard of 1947. She loved telling this story, which always concluded with her saying, "After that, father always knew best." They got out. Others were not so lucky.

Their first anniversary after he died, in December 2002, was especially difficult. But we made the best of it. Diane and I went with her to Sardi's, followed by the show "Movin' Out," the Twyla Tharp dance piece set to Billy Joel's music. It was snowing hard; we each took one elbow and dashed with her through Shubert Alley (connecting 44th and 45th streets) to the theater, arriving soaking wet. The rain washed away at least some of the sadness. We tried to dry off in the handicapped bathroom, with my mother and her cane leading the way. We sat orchestra right, close to the stage. I was afraid the show was too loud, but it was actually a good distraction.

Being Jewish, we didn't celebrate Christmas in any religious way, but our parents didn't want us to be left out. The fireplace was decorative, so Santa came in the front door to leave presents for us. We put stockings out, and he filled them with little gifts. When I told this to someone recently, they thought it was odd. But, I said, my mother designed Christmas jewelry: Christmas-tree pins with red and green stones, and whimsical mice, elephants and giraffes based on her drawings. She and my aunt were in business, and the pins bore the name of their company, Mylu, on the back (a kind of combination of Margie and Lynne.)

When other companies began copying them, we little girls walked around the city looking for "knock-offs." I remember asking the occasional woman wearing such a pin if I could see the back and asking where she got it if it didn't say Mylu on the back. I don't think I am making this up.

The other night I dreamt I went to our apartment building looking for my parents. But when I got there, I knew they were gone. I cried, aching to see them.

You can't complain when your parents lived well into their 80s. But that doesn't make you miss them any less, especially on special days like this.

Monday, December 21, 2015

Adding and subtracting

Only at a dinner party where you've known the guests for a long time could you hold up your plate and exclaim, "I'm eating spinach salad!"

This happened last week when I ate spinach for the first time in six years. Not that I was craving spinach. I had to eliminate as many other iron rich foods as possible because of the ferritin overload that was sitting on my liver due all those blood transfusions I had.

I knew all the bad consequences of  high ferritin, which I believe was 7,000 or more (micrograms per liter), compared to a normal level of 11-307. I chipped away at this by getting therapeutic phlebotomies (having a pint of blood removed every couple of months) and dissolving five nauseating Exjade tablets in water most mornings, downing, and waiting half an hour to eat. The tablets bind to iron and remove it from the bloodstream. I took periodic breaks because it was so hard on my stomach. It was a big day a few months ago when I learned that I was "normal" and did not need to renew my prescription.

So, bring on the spinach!

Now, for the subtracting.

I have decreased from three Budesonide tablets a day to two because the glucosteroid has gotten my collagenous colitis under control. In a month, I will check back in with my GI doctor in a month and hopefully continue to taper.

Any day I take fewer pills is a good day.

Finally, I am now going only every other Wednesday to Boston for ECP, or extracorporeal photopheresis, the light treatment that has worked wonders on my skin...and improved my overall movement and tennis game. This is my week off.

I never thought I would say this when I learned in May that I had to do this, but in a (small) way I will miss it. Not the transportation or the big needle in my arm for three hours, but the cheerful, funny nurses and the friendly, always smiling, physician's assistant and doctor.

My nurse practitioner, Melissa, had told me that she sometimes goes over to the Kraft Family Blood Donor for a feel-good visit, and while at first I didn't understand why, now I totally get it.

Thursday, December 17, 2015

When complaining gets you nowhere

I might finally have to say goodbye to MART, the transportation authority that gives free rides to patients. In exchange for some good stories (another to come) and saving on gas, mileage and parking and fatigue in driving, I am not sure if it's worth it anymore, especially since I am now going every other Wednesday to get ECP, or extracorporeal photopheresis, the light treatment that has greatly improved the graft-vs-host disease that caused my skin to to thicken and harden.

If you are tired of hearing about this, you can STOP HERE.

If you want to hear about how I waited 45 minutes last night at Dana-Farber for the company to send a new driver from Springfield because the one who had taken me and who was supposed to pick me up disappeared, and how my new driver told me that he had five children with four different women and that he was a father at 14 because his then 19-year-old babysitter got pregnant after having sex with him since he was 8, and about how I called MART to complain for the third time and asked if that was enough to get a new service, and how the person said no, you have to complain several times, and how I said several is three, and how I called my efficient Turkish driver friend to see if I could get him back and how he said Westfield Transport is offering a lower bid, then you should continue.

If I get that company again I'll either drive myself and stay overnight at Margaret's or Diane's, or get a ride if someone wants to drive me and sit around or go someplace for the three hours. Actually it's fun at the Kraft Family Blood Donor Center. The nurses are nice and friendly, and there is a camaraderie among the patients (when they are not sleeping) and the people who sit with them. When I left yesterday, I was a little sad to be skipping a week. It shows how perceptions can change because when I first heard I had to do this, I was not happy about it.

Since I have the number for Westfield Transport, I might also call directly and tell the owner not to bother bidding for me because I'm not going to go if I get them again.

My driver taking me to Boston yesterday was half an hour late. Someone asked why I don't drive myself if they are late. Firstly, I think they're about to come. Secondly, my car was in the shop getting new brakes.

When he finally came, he said his boss had told him to pick someone up in Northampton at 12:30 and take that person to the doctor, and when he told his boss that he would never be able to get me at 12:45, his boss said he didn't care. He also told me that the owner wanted him to drop me off in Boston and take someone back to Palmer and then come back to get me, and that when he told the owner that he would then be late for me, the owner said too bad.

I told him he better get me at 6:45. None of the drivers who take me have the time to do another run; they hang around in Boston until I am done. There was no sign of him at the appointed time. I called and he didn't answer. I called the owner, who impatiently told me that he would look for the driver. About 7:30, a different driver called and said he was stuck in traffic on Memorial Drive. When he picked me up he said the first driver had gotten a flat tire. I don't know how he got a flat tire when he was supposed to be waiting for me.

My new driver had been in the car all day. He had started at 4 a.m. and was just beginning to call it a day when he got called to come get me. He was pleasant, albeit telling me more than I needed to know about what his babysitter did with him. He asked if we could stop at a rest stop, and I said sure, why not. At this point I needed to decide if I was going to just eat the Cheez-its I had brought from the donor center or get something to eat. I knew that by the time I got home it would be too late to make anything. I thought I would get a slice of pizza, but that place was closed, so I got a cheeseburger at McDonald's. The less said about that, the better.

When we got to my house around 9:30, my driver was upset that I hadn't left a light on. Some people might think I should have left a light on, but I said I didn't want to use electricity all day when I wasn't there. Looking at the woodsy area around my house, he said, "A bear might get you." He waited to make sure I got in OK.

A touch of kindness in a crazy day.

Still, I had a bad headache, and after doing a couple of things, I went up to bed.

Tuesday, December 15, 2015

Peripatetic and tired

My problem is that I did two things this weekend instead of one. Nothing terrible happened, but I came back drained yesterday after driving to Poughkeepsie on Saturday for a memorial service for a wonderful English professor, spending the night at the Vassar Alumnae House, then driving to Riverdale for a family Hanukkah party the next day, staying overnight at an Airbnb, then driving back yesterday in the fog and, on the anniversary of the Sandy Hook shootings, listening to an NPR program about our epidemic of gun violence.

Also, for the first time ever, I forgot my pills. My pills always travel with me. I had not gotten around to putting them in their pill boxes, so I had the whole bag ready on the counter...and left it there.

The two events happened to be geographically connected, so it made sense to do it. I enjoyed walking around Vassar with an old friend and seeing how much nicer the little area of Arlington has become; the main attraction back then was Pizza Town, in which the owner, George, presided over the creation of White Lightenings, drinks comprised of every kind of white liquor he had. Luckily, it was across the street from campus, and we could walk (stumble) back to our dorms. The town has some nicer restaurants now.

The chapel was filled with people remembering the English professor who often wrote long, literary comments on our papers. He was kind and funny and supportive of my writing, and on days when I was unhappy at Vassar, I felt better after his class.

The ride on Sunday to Riverdale was short and easy, although I did not listen to the book on tape that I got because the first disc was missing. I listened to an a program about Jeffrey Schmalz, the New York Times reporter who transformed news coverage of AIDS (and who died of it at a young age) and is the subject of a book, Dying Words. If my kids are reading this, they might be thinking, "Mom, listen to some music! Stop with the death and dying!" But programs such as On the Media and The Takeaway hold my interest, so that is what I do.

I enjoyed seeing family at the Hanukkah party and eating some "to die for" New York deli food. I do not normally eat this kind of thing, but I practically inhaled the best over-stuffed corned beef with a side of coleslaw and potato salad, followed by melt-in-your mouth cheesecake that my cousin Anne made.

The apartment was too small to accommodate me, so I had walked about a mile from the apartment where I was staying in a room rented through Airbnb and then got a ride "home." It was the only time I have had a problem with an Airbnb. The host had told me to park my car in front of the building, but when I came back Monday morning after getting a bagel and a Starbucks, I saw that I was getting a ticket. I ran to the car but it was too late. I was on the wrong side of the street for alternate-side-of-the-street parking for street cleaning. All these years that I have sat in cars and moved them for street cleaning in Manhattan, I go to the Bronx and get a ticket that could have been avoided.

I went upstairs and said I thought he should either pay the ticket ($45) or refund me the price of the room ($45). His response was along the lines of, "Are you talkin to me?" He said he didn't know about the parking rules because he has his own special spot. I said that as a host of an Airbnb, you are supposed to know your neighborhood. I said I was going to write a positive review but now I would have to point this out. Finally he said he would split it with me...if I wrote a positive review.

Airbnb has a dispute resolution form that you can fill out. He wanted to avoid it so we made the arrangement via text. I said I would go ahead and write the review and he agreed to refund the money. When I told him that I had done it, he said he needed to wait the three days until he could see for himself. I texted back that I am going to have to start the form if he doesn't live up to his end. I told this to a few people who said he should have said he was sorry and refunded the money.

Such negotiations over such a small amount of money seems ridiculous. But the whole thing was so annoying that I need to pursue it.

This was the aftertaste that I had when I got home, all hunched up because I hadn't stopped. I picked up Maddie and went home and took a nap and did a phone interview. Next I wondered if I should go to the Y and exercise or call it a (bad) day. I know I always feel better when I exercise, so I went to the Y and went to the only class on the schedule: cardio kick boxing. It did the job.

Friday, December 11, 2015

A day of odd happenings

Yesterday was strange.

It started with my usual routine these days, checking the three spots where I have put nifty black mousetraps that allow me to release the mouse in a bag without looking at it and then place the peanut-butter-laden trap back in its place. The family likes the silverware drawer, the lazy susan, and the area under my sink. Every time I put the silverware back in, I have to take it out and wash it. So it is on my kitchen table. I found the mouse in the drawer.

(This post is in chronological order, not order of importance.)

I did a phone interview for a story I am writing and did some stuff around the house.

Then, I went down to Enfield to get in on a group lesson with George. I am enjoying my clinics in with Michael, but I wanted to check in with George to brush up on my slice. It was just me and one other woman whom I had not met before. George used me as a slicing model! When introducing us, he told the other woman that I had had three bone marrow transplants. Actually, I said, it was four. He said they must be doing something to my blood in the ECP because my strength, flexibility, balance and movement have greatly improved.

After that, I went to Starbucks to buy some coffee to take home and sit down with the newspaper and have a cup to get me back home. I started talking to people, left, and forgot my coffee.

Back home, I decided to go to a yoga class at 7:15 at Serenity Yoga because I am not going to be able to make my usual Saturday morning class. While waiting, I browsed the freelance writing jobs on line, found one that I liked, and applied to it. Then I went to yoga. I was the only one there, so I had a private lesson in which the lovely teacher, a sub, gave me excellent new tips on keeping my balance, such as finding four spots in my feet and pressing them firmly into the ground. She also gave me a wedge for my hands. It helped with the arthritis in my left hand that is a problem when doing down dog.

At home, now around 8:30, I steamed broccoli and cooked a little ravioli and checked my email. I had gotten a response to my job application. The editor sent a three-page press release and asked me to rewrite it in 300 words, with a focus on the message that the employer wanted to convey, and return it within 24 hours.

It reminded me of being back in Jon Klarfeld's journalism class at Boston University in which he gave us the chronological information on a fire story, with the lede buried (something about a person in a bathtub), and we needed to rewrite it in order of importance, and if we failed, be greatly mocked. I say this with affection because it toughened me up and he did it with a sense of humor.

I violated my rule of not writing before bed and stayed up until 11:30 rewriting the press release. I tossed and turned and woke up tangled in my quilt and sheets. This always happens, but in this case I thought I needed to get the job done quickly.

Today, I had planned to go to the Northampton Y for a yoga class. But I have go back to Longmeadow to get my coffee, so I signed up for the round robin in Enfield. I thought of canceling because I am bleary-eyed. But I already said I would go and that is what I want to do. Hopefully I will be able to see the ball.

Thursday, December 10, 2015

When I cried two times in one day

I hadn't planned to start my every-other-week ECP schedule yesterday, but it happened that way when the driver from Westfield Transport failed to show up. Worse still, when I called to find out why the driver was late, the owner lied to me and said he would be there in 10 minutes, and when 15 minutes passed and the driver called me, he told me a sob story about how the owner had overbooked him and he was in Springfield needing to get gas and furthermore if he took me there was no way he would be able to bring me back at 6:45 p.m. because he would be in another part of the state.

I called the Kraft Family Blood Donor Center to cancel and called MART, the place that arranges these rides, to complain. They were totally out of line: The driver or owner was supposed to give MART at least 15 minutes notice if they were unable to make a pick up. I haven't complained about this in a while because my Turkish friend and his fleet, Sonic Velocity, had been doing a great job. I asked if I could get him back again, but you can't request a driver due to the bidding system that I don't quite get. I have his number and I think I will call him to see what he can do.

Now, it just so happens that I am on a maintenance procedure and it was OK for me to skip. Although I was frustrated and annoyed, I could handle it. But as I said before, this is a prescription transport system for people who need to get to doctors' appointments for vital treatments, and I am sorry for the really sick people who not only get stood up but also have to listen to a driver make excuses.

Tears of frustration briefly filled my eyes, but I got over it and went about my business.

Earlier in the morning, something else happened that brought tears to my eyes. I was having a great time at the round robin in Enfield when my opponent, a guy, hit a ball hard into my thigh. It stung so much that I had to stop and walk it off. We were almost done with that round. I didn't finish. I said, "There's no crying in tennis," but the teary thing lasted until I got on the court with another group.

He apologized and said he hadn't meant to do it. Of course he didn't, but guys should not hit the ball so hard when playing in this kind of event. Some of the other ladies at a lovely tea afterwards also brought this up, saying it is no fun to play with or against a guy who just hits to ace you and place winners.

Most of the men we play with know better. They can do other things, such as practice spin and placement. One of our regulars even asks us what speed we would like on his serve.

But to end on a better note, I just have to say, I love my tennis friends.

Wednesday, December 9, 2015

That blood thing that I have been getting

When one of my friends approached me at our fun gathering last night and said she had a complaint about my blog, I thought I had done something wrong along the lines of libeling someone, maybe one of those crazy drivers.

But it turns out she had a constructive criticism: While sometimes I remember to link to the explanation of a medical procedure, such as the photopheresis, or ECP, that I have been getting at Dana-Farber since May, I also sometimes write the post quickly and neglect to do it. This website provides a good explanation:

Light treatment (ECP)
This is also known as extracorporeal photopheresis or light therapy. Photopheresis can improve skin, liver and mouth GVHD. 
Doctors normally give photopheresis after other treatment hasn’t worked or has stopped working. Photopheresis is a complicated process and it may take up to 6 months before you see any real improvement in symptoms.
To have the treatment your nurse will connect you to a machine by a drip. Your blood then goes through the machine, which separates off some of your white blood cells. You then have your blood, minus the white blood cells, given back into your vein. The separated white blood cells are treated with a special drug and then exposed to ultraviolet light. This light activates the drug so that it is able to destroy the abnormal white blood cells. After this process your nurse gives back the treated white blood cells into your vein.
Each treatment takes between 3 and 4 hours. Having this procedure does not hurt, but some people may feel a bit weak or dizzy during or after the treatment. After the treatment your skin and eyes may be more sensitive to sunlight for about 24 hours, so you need to protect yourself from the sun and wear sunglasses.
The Kraft Blood Donor Center (where I get the procedure done) is technically at Brigham and Women's Hospital, but I usually say Dana-Farber because I come through that building and it is halfway down the corridor connecting the two. Ellen, the PA, was not happy with all of the outdoor tennis I played this summer, and neither was Dr. Alyea, but I applied a ton of sunscreen, and, even on the hottest days, sometimes wore long sleeves. 

In the department of "learning more than I never wanted to know," I learned the the procedure was originally developed to give lymphoma patients radiation only to their blood without having to do it to their whole body, and then some genius researcher realized it works for graft vs. host disease of the skin. If you click on the link, you can read about how GVHD is a common side effect of an allogenic bone marrow transplant (a transplant using a donor's stem cells). It caused areas of my skin the thicken and harden, and my hands to swell, constricting my movement in a way that I did not totally realize until the procedure began to work, meaning the swelling went away and my skin softened, with the net benefit of helping me move better on the tennis court!

I hope to cut back in the near future to every other week. For some four months, I have been going every week, and for the three months before, twice a week. You don't get to ever totally stop because if you don't get the procedure periodically, the problem is likely to return.

During the times when I was dehydrated from diarrhea or from extreme sweating over the summer, my veins flattened out and they had trouble getting the big needle in. A few times I even got fluids before. I am going today and I hope I do OK in light of two factors that might cause some dehydration: the wine that I drank last night at our dinner, and the coffee that I plan to drink today at the tennis tea following the round robin.

I'll have to drink a lot (of water) on the way to Boston. I was going to drive myself straight from Longmeadow, but I decided to only spend a short time at the tea so I can come back and get a ride. Fingers crossed that the ride will be non eventful.

Tuesday, December 8, 2015

Getting together with Old Repubs

The way it was
Tonight I joined about 25 Old Repubs at the Red Rose Pizzeria in Springfield for a festive evening of storytelling and reconnecting. Old Repubs is the name of the Facebook group of former employees of The Republican, a group also including some hardy current reporters and editors. One of my former colleagues calls us recovering reporters.

Newspaper people tell the best stories. We talked shop – covering what has become of the industry and what it once was – and we told jokes and talked about our lives and our families and the state of the news biz and other things. Many of us lingered long after the meal was done, wanting to stay longer. Many have been gone for a long time, but we didn't miss a beat. We talked about how we miss the camaraderie, which before things started to go downhill could not be beat. We had joked around a lot but worked hard, staying late if we had to make up the time.

I never went back after my relapse in 2007, but, having worked as a reporter at the Springfield paper for more than 25 years, I often still say "we" when referring to the paper.

That is not to say it was all rosy. I still have nightmares about work: I don't have a chair, the light is too dim to see, they want me to work but there are not enough computer terminals to go around, they want me to produce more stories on impossible deadlines. (There never were enough working chairs; someone from the night shift would often take a day shift person's chair when he or she had just gone to the bathroom, and I would often start my day hunting for my chair.)

Recently, I awoke from a nightmare in which it was the last day of work before the paper went out of business, and we were all crying and saying this could not possibly be so and we did not know how to do anything else. I told this to someone tonight and she said that given the rate at which people are taking buyouts, retiring, or being laid off, the dream might be prescient.

When we get together, we lament what has happened to the industry.

Still, sooner or later, someone will say, "We had a good run."

Sunday, December 6, 2015

Calling Dana-Farber

A sign that I've been around for a while: I knew many of the hematologists and medical oncologists among the 60 Dana-Farber physicians in Boston Magazine's 2015 "Top Doctors" issue.

Seeing Richard M. Stone on the list took me back to a wild Friday in April, 2003, the day after I received the shocking news that I had leukemia. I had gone to work at The Republican. Friends and family members called all day, determined to disabuse me of the idea that I would just be treated in Springfield. They said I would be crazy if I didn't go to Boston. I said OK, OK, but I didn't know exactly where.

Serendipitously, Diane's sister-in-law, Suzanne Koven, a doctor at Massachusetts General Hospital, gave her a name: Richard Stone, chief of staff and director of Dana-Farber's adult leukemia program. At just about the same time, I had been on the phone with my parents' across-the-hall neighbor, also a physician, who had given me the same name.

Close to 5 p.m., Diane called Dr. Stone's office. Over the years, when the two of us see him around, she whispers what he said when he picked up his own phone.

"Stone here."

What top physician picks up his own phone on a Friday afternoon? Luckily, Dr. Stone did.

He couldn't take me, but one of his associates, Daniel J. DeAngelo, could. I got right through to his secretary, something also amazing when you consider all the times you get a voice mail. She wanted to know my blood counts. They were somewhere in the pile of papers and notebooks strewn around my desk as I tried to finish up my stories. My editors, Mimi and Ray, dug around with me until we pulled the paper out. I don't remember exactly what they were, but they were low.

Dr. DeAngelo's secretary gave me an appointment for Monday. She said to pack my bags, because I wasn't going home for a while. The speed with which this happened still amazes me. Acute myelogenous leukemia is a fast-growing cancer, and I might not be here now if I hadn't gotten into the right hands so quickly.

Saturday, December 5, 2015

When the news gives you nightmares

In my dream, I was hanging out with George W. Bush. He had just won re-election again. He seemed like a regular guy. I asked him what he thought of Donald Trump. I said to myself, compared to Trump, he doesn't seem so bad. (I think I got this in my brain because I read somewhere that now Mitt Romney doesn't seem so bad.)

We walked by an old boyfriend. The boyfriend gave Bush a half-hearted congratulations, saying, "Congratulations...I guess." Then he started screaming at Bush, and I had to drag him out of the room. I said that if he wanted to get anything done, he would need to speak more calmly. I knew why he hated Bush so much, because I felt the same way. "If it weren't for his bombing of Iraq, the Islamic State would not have arisen from the chaos," I said.

We had a meeting. Bush said he couldn't remember what Planned Parenthood does. I said, "It provides vital healthcare to women." Then, someone started a fire. I bunch of us were running, running, unable to see where we were going. I ran through the Wesleyan campus and then wanted to get to Vassar. I asked Siri for walking directions, but she was busy talking to some people I could hear in the background. "Pay attention to your job!" I yelled.

We found our way out of the smoke and ended up at a little house where the people took us in. I was drenched from running in the rain and needed a warm shower. We looked out to the road and saw a stream of people coming to the house (refugees?) The owners said they didn't know how they could accommodate all those people, but they let us in and we had to scramble up some small stairs to where we could take that shower. (I think we still had Bush with us.)

I was missing school, no, actually it was work. But the worst part was when I looked in my bag and saw that I had only one of the boots that I had bought in Spain. I said I'll never replace it. Someone said it's probably in your other suitcase, and I hoped it was. I think this comes from having thought I lost one of the earrings Katie had bought me in Rome, and being so down on myself for not putting the little plastic thingies on the back, and then finding it in the couch.

Well, that covers just about everything.

After going to the Odyssey with a friend on Small Business Saturday last week and buying some books that I want to read, I bemoaned the fact that I am don't read as many books as I would like to. She asked what I was doing. I said, reading the newspaper, watching the news, checking out Twitter, checking Facebook, starting first thing in the morning. She said the news can wait and suggested I get up and read a book.

The next day, I read a story headlined, Addicted to Distraction. The author wrote that he was horrified to find that when reading a book, he realized he was reading the same line over and over, having lost the ability to concentrate. It is an interesting story that probably speaks to many of us. Among his distractions was "hungrily searching for new tidbits about the presidential campaign." He tried a detox just to see if he could do it. He succeeded, partially, but then drifted back.

I grew up needing to know. When we went on vacation, my father bought two copies of The New York Times so nobody would have to wait. My mother took hers to bed at night. She, too, sometimes had trouble getting to a book because she needed to read the paper first. We discussed politics and current events. It is not by chance that I found my way to a newspaper job.

The world is a train wreck; the Republican race is scary. It is hard to turn your head away. But clearly a break is in order. I am going to spend a lot of time reading a book this weekend. My only schedules events are walking Maddie and going to yoga. But first, I have to read The New York Times and check the TV news.

Wednesday, December 2, 2015

From not answering the phone to oversharing on the phone

What's worse than a crazy driver?

No driver at all!

What's worse than no driver?

Waiting for more than an hour, to no avail, for someone at MART to pick up so I could find out what happened and try to book a ride for today, while Hannah Kitzmiller, the resource specialist at Dana-Farber, also holds for more than hour, then realizing I better gas up and drive myself, which I do in the pouring rain, and then driving back in the dark in the rain and fog, an eight-hour day all together.

MART is worse than Comcast, and that is saying a lot. The only way you can get through is to put your phone on speaker and carry it around with you in your house for more than an hour. Maybe even two. The recorded voice tells you that you can leave a message on the website. Which does not work.

Well, we all know that it could be worse. I realize this especially as I sit in my warm house eating broccoli and ravioli, relaxing with a smidgen of Ativan. Also I think my mother sent me a sign when I was standing with wet feet, pumping gas, and looked down to see a quarter in the dirt.

I got a high-test Starbucks and made it almost all the way to Boston without getting sleepy, stopping in Framingham for a pick-me-up of peanut M&Ms.

I got there early because I thought I had a 2 p.m. appointment with Dr. Goguen (to check on my tongue), when really she had canceled and changed the appointment to January. It is hard to keep track of her. This is the second time she rebooked. I thought I was very resourceful putting a reminder in my phone for the 2 p.m. today, which I almost forgot until I got the reminder yesterday. But I had forgotten to remove it. That part worked out well because I was able to get into ECP early. Still, I wasn't done until 6. And that was with only five cycles. I'm glad I was allowed to cut it back from six cycles.

I told Ellen, the PA, that Melissa had said I could start going every other week starting in January. Ellen thought that was a good idea. We would do that for three months and then cut back some more. After that, I would space out some more. But I will never totally stop. It I did, the Graft vs. Host of the skin is likely to come back.

While I was lying there getting my blood removed, a woman who I think was a resident spoke loudly on the phone about a patient. I found this disturbing and unprofessional. She was talking about a patient who sounded a lot like I had been. Platelets as low as two, bumped up to 40 after a transfusion, responding just to HLA matched platelets, in some kind of difficulty. The woman said she had had a disagreement with Dr. Antin and realized afterwards that it was a bad idea because Dr. Antin always needs to be right although she still disagreed with him. (She was referring to Joseph Antin, chief and program director of stem cell transplantation, who was my friend Patricia's doctor.)

Rather than looking at me, she looked through me. Meanwhile, I had received a call from a friend and said I didn't want to talk too long because I was in a big open space and didn't want to disturb anyone. Signs in the elevators warn against talking about patients. And here was this employee discussing a patient out in the open.

It sounded so much like me that I told my nurse that I had been that low and had been saved by an anonymous donor when I needed platelets before they could insert an catheter in my neck to begin dialysis when I was in kidney failure.

With that story fresh in my mind, I went over to the donor side as I sometimes do, to tell the story and thank the donors. I spoke to one woman who, "It's my pleasure." The donors and the nurses seem to like seeing someone like me who would not be alive if not for their generosity, and I like to go over and thank them. I wish I knew that one particular donor who saved my life.

Friday, November 27, 2015

Missing my mother, and feeling grateful for her life

The four months leading up to my mother's death on Nov 26 – which this year fell on Thanksgiving – and the three months after in 2006, were the worst.

I had found out in August of that year – on my birthday – that she had lung cancer. Maybe Stage 3, but it, turned out, actually Stage 4. I said to a friend, "What am I going to do?"

"You'll do what she did when you were sick. You'll be there for her," she said, referring to my battle with leukemia.

In the months before her death, I was holding down a full-time job as a newspaper reporter and running a house with three kids in it, and racing back and forth to New York, trading shifts with my sister, Diane, as my mother quickly became bed-ridden. Meanwhile, the evil empire – a.k.a. the architects who had bought our building to convert to condos – were wreaking havoc in the lives of the elderly rent-controlled residents they couldn't kick out. One of the remaining few tenants at 1200 Fifth Avenue, where I grew up, said that they thought the new owners were trying to kill them. In updating the heating system, they butted out a wall in our already small dining room, upsetting my mother because she had a special drawer built onto the wall to hold her precious silverware, some of it previously belonging to relatives who had been killed by the Nazis. They painted the wall an unsightly green. My mother loved her Yankees, but she called it the Green Monster, in honor of the left field wall at Fenway Park, home of her grandchildren's beloved Boston Red Sox.

The condo owners removed the old windows and put in heavy top-to-bottom single paned monstrosities that were difficult to open, and furthermore, not installed properly, a point proven when one fell on an elderly resident, injuring her and sending her to the hospital.

We wondered if all the dust and stress had had something to do with her getting lung cancer. Inside me, a relapse was brewing. (I had been diagnosed with leukemia in 2003, treated with extensive chemotherapy and received a bone marrow transplant.) Later I wondered if the stress and all the bad air had set it off the relapse that occurred some six months later.

The new owners violated city codes by failing to turn the heat on that fall. They preferred to pay the fines. They even begrudged us the space heaters they were supposed to buy. My mother lay huddled under quilts and blankets. It was like a florist in there, so many people had sent flowers. Friends and relatives came and went. I lay next to her, holding her hand.

She was drifting in and out of reality when Thanksgiving came. I wanted to bring my children, Ben, Joe and Katie, to New York to have it by her bedside, but she said to please go home to Western Massachusetts and have it with them in the dining room of the historic colonial where my parents had loved to have Thanksgiving with us. Meanwhile, I finally decided to take a leave of absence from my job so I could spend her remaining days with her. She died before I got the chance. When I cried and cried and cried, I couldn't stop thinking about Thanksgiving.

A wise cousin said to me, "You gave her the greatest gift. She wanted to picture you in your home with your children, and you let her be the mother and tell you to do that." She had not been alone; my aunt and uncle and cousin were with her, and it was all for the best.

We had three months to clean out the apartment. When a toilet broke, the EE (Evil Empire) at first said they didn't want to fix it because we were leaving soon anyway. They finally caved in.

Every Thanksgiving, this all comes back to me, and I wonder how it will be.

It was Ben's year to be with my daughter-in-law's divorced father and his wife. So for Thanksgiving, it was me, Joe, Katie and Jim, my former husband, at my house. In the two days before, I must have gone to five stores picking up this and that. I figured I did not need do buy the yahrzeit candle that Jews burn on the anniversary of a loved one's death. I thought I had a stash. But when I reached back into the cabinet, there were none. The stores were closed. I made a few calls to Jewish friends, to no avail. Then I remembered a friend's mother had given her an electric one. We had joked about it at the time, but it came in handy after I called her and she said she would lend it to me.

At her Thanksgiving morning yoga class, our teacher, Michelle, talked about a positive way to view bad things: "This bad thing happened...AND this good thing happened." For example, she found out that she needs to replace her heating system, AND she still has heat in her studio to teach classes for now.

I raised my hand.

"At the last minute, I realized I did not have a yahrzeit candle to burn for my mother," I said. "AND my friend had an electric one." I said I think my mother would be OK with this. Michelle said she thought so too.

I applied Michelle's phraseology throughout the day.

"I miss my mother so much, and she had a wonderful long life."

"We had a horrible end to our life in the apartment, and we had a wonderful life there."

"I am sorry not to be with Ben, Meghan and (baby) Nell, and I get to be with my other two wonderful children and I am friendly enough with my ex-husband to have it with him."

I had a bad divorce, and now I can cook Thanksgiving dinner with my ex-husband.

I had leukemia three times, and I had the Dana-Farber Cancer Institute and my bone marrow donor, Denise, to save my life.

When I took my mother's beautiful serving spoons out of the drawer in the hutch, I said, "Hi Mom," as I looked at the photo of her doing one of her favorite things, arranging flowers.

I knew my mother was there, and it was OK.

Wednesday, November 25, 2015

A good morning with Friends

Yearbook photo, next to
William Penn's hitching post.
Telling people you went to a Friends high school can be like playing Who's on First.

Me: "I went to a Friends school in New York."

The other person: "I wasn't asking about your friend's school. I was asking about yours."

When you say a Friends School is operated by Quakers (The Religious Society of Friends), people aren't sure what to make of that either. I only knew one or two Quakers at my high school, Friends Seminary. Actually, a good percent were Jewish.

So what about the Quaker part? The philosophy guided our school. Quakers believe in the inner light in everyone and in working for peace and social justice. It is hard to say it without sounding corny, so I'll send you to the Friends Seminary website.

When I was in 10th grade, the school organized a bus trip to Washington for a silent vigil around the White House to protest the Vietnam War. That is the kind of thing we did. Silence is another key component of a Friends education, specifically the one-hour silent meeting for worship that we had every Wednesday in the meeting house. There is no program; you sit in silence, and if you are moved to speak, you stand up and begin. This website has a good explanation of Quaker Meeting.

Meeting house, left, and Friends Seminary
My mother said that as soon as we went into the beautiful historic meetinghouse on 15th Street and Rutherford Place, she knew it was the school for me. The school is one of some 80 in the country; the Obama girls attend Sidwell Friends. When I reconnected with friends from Friends who live in the Valley, we hardly skipped a beat. My friends from Friends are like family.

Wherever I live, I usually find a Friends meeting. For example, when I lived in Brookline, I went to the Friends Meeting at Cambridge.

Some time ago I went to the Mount Toby Friends Meeting in Leverett, but I hadn't been for a while. Sunday mornings I usually either go to a spinning class at the Holyoke Y or a yoga class at the Hampshire Regional Y in Northampton.

I bring this up now because in the past two weeks I went first to the Friends Meeting in Northampton, and then this past Sunday to Mt. Toby. A friend from Friends and I had talked about wanting to go together, and I was curious about the meeting in Northampton (on Center Street) because I pass by it all the time.

Given the terrorist attacks of the previous week, it seemed like a good time to go sit with the peaceful people. So that is what we did. He wasn't available, so I went by myself to the Mount Toby meeting. It is easy to find – it's on Route 63 – but, if you know me, you know I can get lost in South Hadley. I misread the directions and took one wrong turn, which led to another, and another, with Siri being of no help and saying, infuriatingly, "I'm sorry, I seem to have lost my Internet connection."

I got there about 20 minutes late, but people were coming in and out anyway, so it didn't matter. Just coming into a place like that, I could feel my blood pressure drop. We sat in silence, with some people standing up to talk – mostly about the terrorist attacks – and then, after an hour, each person turned to his or her neighbor, shook hands, and said, "Good morning." Then people went around and introduced themselves, with newcomers like myself receiving a warm, "Welcome." Afterwards, I chatted with some members over coffee.

 Here is the description on the website: Mount Toby Friends Meeting is a welcoming faith community. We come from many different religious backgrounds, including birthright Quakers, Jews, Protestants, Catholics, Buddhists, Pagans, and those with no previous affiliation. Believing that every human being shares in the universal Light, we join together each Sunday to create an expectant silence where the spirit may enter. Our Meeting is “unprogrammed,” which means that there is no formal order of worship, but those who are moved by the spirit can speak. Thus we all are ministers as well as attenders.

Friends education gave me the gift of being able to return to meetings and feel connected and gain a sense of inner peace wherever the meetings are. The gym will be there the rest of the week. My friend from Friends and I are going to return.

Saturday, November 21, 2015

Good news 'bad news'

Regarding the bad news in the headline, I put it in quotes because it is not really bad. Since I have reported actual bad news in the past, I thought I should begin with that caveat.

First, for the good news:

#1. I had a great day Thursday in my first substitute teacher role in an adult literacy program. As a volunteer at the Literacy Project in Northampton, I felt like I knew enough to transition into a paid role. Freelancing, especially coming into it so late in the game, is an on-again off-again source of income. I am on the sub list for the Literacy Project's locations in Western Massachusetts and for the Valley Opportunity Council in Chicopee, which is where I led my first class on Thursday.

I was a little nervous, but the students were fantastic, helping me out and showing me the routine. We changed declarative sentences into questions, read a book they already knew, focusing on expression and meaning, and did some word puzzles. It was a beginning level Adult Basic Education course like the one in which I have been volunteering, so I felt comfortable as soon as we got going. As is the case in Northampton, I found there is always something to learn from these students, who want to be there, as opposed to subbing in a public school...well, we all remember what it was like to be a kid in a class being led by a poor sub.

#2. Maddie had her weigh-in at doggie weight-watchers, a.k.a. The Valley Veterinary Clinic. She lost five pounds in a few weeks. That's about what I guessed because her breathing had returned to normal. The vet wants her to get back to 60 pounds, meaning she has seven to go. The tech who weighted her said to let up on her at the holidays.

#3. Tonight is the long-awaited performance of The Moth MainStage at the Academy of Music. I remembered my friend Emily talking about The Moth coming to Pittsburgh and saying how interesting it is to hear people tell their stories. You can also hear them on public radio on The Moth Radio Hour. When I got an email from New England Public Radio in August saying that tickets were on sale and would sell out quickly, I went to the site immediately and saw it was 80 percent sold out.

I got two tickets, forgot about it, then panicked when I couldn't locate my records, which is unusual because I usually print everything out and put it in a special place. Luckily, the Academy of Music box office person said I was all set and could get the tickets at Will Call.

#4. Last night I went to the tennis mixer in Enfield. It is a little late to go that far, but I like doing it once a month. The tennis is always fun, the people are nice, and the pizza is good.

#5. I made light and fluffy waffles this morning by searching for an easy waffle recipe and getting this one from All Recipes and bringing out my old waffle iron. (Every recipe I make has to begin with the word "easy." Hence, the easy banana bread I made earlier this week when I noticed I had four overripe bananas.)

OK, so, as for the 'bad' news: The mice are back...dancing through my kitchen drawers.

I heard one in my walls yesterday morning and came down to find it had left some presents in the silverware drawer. A post on Facebook drew some interesting suggestions, such as, learn to like cats, which is impractical since Joe and I are allergic. A couple of people suggested peppermint. I need to get some mouse traps.

Yesterday I put all the silverware through the dishwasher and cleaned out the drawer. Today when I went to look for my measuring cups I saw that that the mouse, or mice, went into the big drawer containing spatulas, large spoons, etc. It will have to be emptied out an cleaned.

On another topic, when I was telling Katie last night about my "dilemma" about whether to choose the Ludlow pizza mixer (closer but not enough tennis) and the Enfield mixer (a little too far but more tennis), I summarized with letters that stand for this kind of problem, and the problem with the mice: FWP.  First World Problems, all.

Thursday, November 19, 2015

(Not) just another day at the Kraft Family Blood Donor Center

Yesterday, there was nothing wrong with my driver, but a few things were wrong, or at least odd, with my day.

I called ahead to the Kraft Family Blood Donor Center like I am supposed to do to say I was on my way in for my 3 p.m. ECP. The front desk person who took the call said she would let the nurses know. But when I got there it turns out she hadn't, meaning I had to wait about 20 minutes for the machine to be primed.

Then, my nurse had a hard time getting the needle into a vein where it would draw. When she finally had it in and was waiting for the machine to start, she realized it was taking a long time. She called in another nurse who said one of the tubes was not connected properly and was drawing air. They had to take out a new kit and start again. In the meantime the needle in my vein started hurting a lot. She flushed it, and it hurt even more. Turns out it had infiltrated. She had to switch to my right arm. The machine beeped repeatedly, signaling that my blood was not being pulled out. After some injections of heparin to thin out what was probably clotty blood, it finally started working.

While we were waiting for the machine to start, we talked about the Paris attacks. (How can you not?) My nurse reminded me that back a month or so ago when we were talking about the refugee crisis, and she had said she didn't want any Syrians to come to this country because terrorists would be sneaking onto Massachusetts Avenue, I had said these were just poor people in need of a haven.

She said, "I told you this would happen," referring to the speculation that one of the attackers had slipped in with the wave of Syrian refugees. I said actually, most if not all of the attackers were from Belgium and France, and, judging from what I had heard on the news, the potential for this problem is greater in Europe due to the controversial Schengen agreement, allowing for the free movement of people across the European bloc. I told her I also heard that the vetting process in the U.S. is more thorough. And I asked, was she sticking me so many times because of our disagreement. She laughed and said of course not, which I knew to be the case. It was just one of those days.

I took a nice nap and then woke up and watched most of an episode of Bloodline. I had told my driver I thought I would be done early (because I have gone down to five rounds instead of six), but in actuality, I was done late, at 7 p.m. We closed down the place.

Getting home around 8:30 is a kind of strange time. Too late to eat a real dinner but too early to not have anything. In the car on the way back I had had a clementine, some popcorn and a piece of the banana bread I had made. At home, I had yogurt with chia seeds and raspberries and some of the Teddy Grahams that are an addition to the snack menu at the Kraft Center. The chia seeds made me feel healthy, and the graham crackers made me feel like a kid.

Tuesday, November 17, 2015

On waking up in the middle of the night

Someone used to call me pokey because I slept so late. I did that for a long time while my body was adjusting to all the things I had gone through.

I'm still pokey in many ways, such as getting out of the house. But instead of sleeping too late, I have been waking up too early, usually between 4 and 4:30 a.m. It stared about four months ago. Of course I looked it up and saw that waking up in the middle of the night is not uncommon. I mentioned it to some friends who had the same issue. I fall asleep fine but then wake up when it's too early to get up. I try the things that you're supposed to do: progressive relaxation, three-part breathing, thinking of something calming. My yoga teacher, Justine, said to try putting on my eye pad, so I have done that too.

If I give up, I know that checking my iPhone ruins my chance of getting back to sleep. Who's on Facebook, who's Tweeting, who might be emailing in the middle of the night. I did that for a while, until someone pointed out to me that the screen is the worst, and these seven tips for falling back asleep confirmed it. Stress is said to be a factor, but I don't feel any more, or less, stressed than usual. Sometimes I think it comes from writing too far into the evening, causing my brain to go into overdrive that wakes me up at night. A person could get stressed out just wondering about it.

Today, I slept until 5:30 and thought that was great. Maddie woke up at about the same time; I got her to lie down for another 15 minutes or so. Still, I had to rush to get out of the house to get to the Literacy Project in Northampton on time for my 9:15 a.m. volunteer tutoring job. I had decided I had to use the over-ripe bananas to make banana bread. Then I got glued to the morning shows, watching the news about politics and about the Paris attacks. I can't say why that took three hours, but it did.

Observation of the day: If you take the four small Polish pottery bowls down from the cabinet and put them on the counter and balance them with your left hand while reaching up with your right hand for the larger one in which to put the spaghetti you are cooking, one of them is likely to fall onto your tile floor. And break into a million pieces. And if you close the door to the kitchen to eat your pasta in the dining, your mess will still be there when you go back in.

Saturday, November 14, 2015

New kid on the block

Yesterday, after I played tennis at 8:30 a.m. with a group of seniors at Bay Road Tennis, one of the men told me, "You're too young to play. You have to be at least 65." I think he was kidding.

Turns out they are in their 70s and even 80s. Some of them look their age; others do not. They have obviously played forever and are good at what they do, including crazy spin and perfect placement. The only difference is that I run after the loose balls while they take their time.

I looked over at one player who looked younger and asked, "What about him?"

"Oh, he is in his 70s and he has two stents and no prostate." I'm not sure what the prostate thing has to do with tennis, but we'll just leave that be. It's just $12 for non-members, so I'll do it regularly except for going to a mixer once a month.

Thursday, I met a nice Jiffy Lube guy who, after seeing my yoga mat in my car, said he does yoga, and although the other Jiffy Lubers laugh at him, it's what keeps him in shape. The others can't believe he is 45. I told him to say hi to his yoga teacher Susan Moore, who had been my physical therapist.

I liked him because he did not try to sell me extra stuff, except for the air filter which I needed because a critter had chewed around the edge. He said if you take the filter out and put a dryer sheet on top, you will deter the critters. I told him I was overdue because I keep trying to come on Tuesday to get the discount but find the lines too long. He found another code to give me the discount "just because I like you."

On Wednesday, a new driver took me to Boston. I called the driver from last week and asked him not to take me if he has to be on the computer and on the phone. He said he has to dispatch and would send me another. As loud as the Turkish boss was, this driver was so quiet I could barely hear him. That was fine with me.

When I got to the Kraft Blood Donor Center, I found out that all the beds were taken by patients who had ports, and I would need to sit in a chair. At first I was unhappy because I thought it was the same reclining chair that had given me a backache, but it turned out to be a new heated chair that even vibrates as though you're in a nail salon. I got so relaxed I dozed on and off sooner than I usually do.  From across the room, a patient was telling my nurse, Roberta, about his cleansing diet. He started talking about the protein drinks he takes, and then Roberta talked about her own concoction, and one thing led to another until she was pulling up photos of wheatgrass on the computer screen and saying how good for you it is. Esther brought over some Halloween candy and opened it for me. These distractions almost made me forget the big needle in my arm.

In this way, the time passed, and before I knew it, I was done.

Tuesday, November 10, 2015

Going back to Vassar College

Professor Gifford in 1982
Next month I am going to go to Vassar for a two-night stay at the Alumnae House to attend a memorial for one of my English professors, Bill Gifford, with the secondary goal of eating a Vassar DevilI was unsure about going, because I have mixed memories about my college days, but a former classmate nudged me, and also I would like to go and share memories with other writers and pay my respects to Professor Gifford's family. I'm sure they'll be happy to see how many professional writers he helped produce.

I stayed in touch with him for a while but then drifted away, and I was sorry after I saw all the students who remained close. But what are you going to do? Time passed. Stuff happened.

His Facebook page, In Memory of Professor Bill Gifford, Vassar College, is filled with tributes by professional writers who attribute their success to his encouragement. I wrote this on the page: Mr. Gifford was always very nice to me and supportive of my writing. I was not always that happy at Vassar but I usually felt better after his classes because he was so friendly and warm. After graduating in 1976, I went on to get a master's in journalism and to write for a daily newspaper, and that might not happened had I not had such an encouraging teacher. Although other students called him "The Gif," that was a little too informal for me!

This upcoming trip to Poughkeepsie precipitated a nightmare combining back-to-school anxiety with newspaper-reporter anxiety, like so:

The teacher in a college writing class told us to write a short story. I tried fictionalizing my memories of my high school boyfriend. It was awful. The teacher marked it up and told me so. I went back home to our New York apartment, where I tried to redo it on an old clunky manual typewriter. Frustrated, I decided to change my topic to an infamous tennis team trip to the Districts in Providence, R.I., where all sorts of crazy things happened. The teacher said I couldn't change topics because a photographer had already been assigned for the previous story.

I got so upset about being told to write fiction that I screamed, "I just cannot make things up!"

By the way, in case you're wondering what is in a Vassar Devil, it a mix of devil's food cake, fudge, ice cream and marshmallow sauce. Given my recent intestinal problems, maybe I should skip at least the marshmallow sauce, which might have seemed appealing to me in college but does not dies not sound so appetizing now. I could chase with Tums.

Friday, November 6, 2015

My two months of fame (at the YMCA)

When Julie from the Holyoke YMCA left a message last week for me to call her, I thought maybe I owed some money.

But when I called back, she said I had won the Golden Sneaker award.

I wasn't sure what that exactly meant. She said it meant I was a good role model. Some nice person had entered my name for the award that is chosen every two months. The staff read the entries over, without looking at the names, and they picked me!

I asked if I actually got a golden sneaker, and Julie said that I really did. I thought it was probably a little charm, but it really is a gold sneaker, as you can see from the photo.

Julie asked me to come in so she could interview me for a write-up that is posted in a display case in the lobby. I told her reporters hate to be interviewed, but I would do the best that I could.

It wasn't bad at all. Her questions included asking what motivates me, and I said, among other things, that although it isn't always easy to get out and exercise, I always feel better mentally and physically when I do. I also said I enjoyed discovering new activities, such as spinning, where at first it was hard for me to stand up and sit down, but now I can not only keep up but also get into the fast pace and loud blaring music and being one with the group. If you heard me telling my kids to TURN THE RADIO DOWN in the car,  you would never believe this other me. Call it Zen and the Art of Spinning. It has also counteracted the muscle-weakening effects of prednisone and helped get me stronger.

Then, she did a nice write-up. I thought it would be a little thing on the wall, but I was surprised at how big it was when I came up from spinning the other day and basically came face-to-face with myself.

I thought I was just showing up.

But I guess if you believe Woody Allen, "Eighty percent of success is showing up."

Wednesday, November 4, 2015

Just another crazy day on the road

"David: Axel."

"George: Axel."

This is my Turkish driver dictating texts into one of his phones while barreling down the Pike at 77 miles per hour. He maneuvers two phones at once and monitors his computer, where he keeps track of his 16-car fleet, including the repairs that George and David need on their cars. Customers call to complain, drivers call for assignments. A loud conversation takes place in Turkish. This man with the mane of the wavy black hair is the boss.

We hear a loud POP. A truck has gotten a flat tire. A piece of rubber flies past the windshield. We escape without harm. And somehow I get to Dana-Farber in one piece. I tell the nurses about this and ask what am I going to do. I am not going to file a complaint about him because he told me how he built this business from scratch based on two broken-down cars. I like him, he gets me there fastest, and he is very polite. I think I will call him directly on his cell phone and say that I am uncomfortable with him conducting business while driving me, and if he has to do it, please do not put in a bid with MART to drive me again.

The day started with a beautiful Indian summer clinic outside. I had just about half an hour to make my lunch and get my things together – well, just my computer and a book that I don't usually read. Marlene, my nurse from last week, who I also had today, had suggested asking Melissa if I could do five instead of six cycles because my arm starts to hurt at the fifth and it really doesn't make the much of a difference. Melissa gave the OK, but when Ellen the PA came around she said she would rather see me do six to get the most benefit. I told this to Marlene and she said there is no reason to sit in pain. I said I know that pain causes stress, which releases the hormone cortisol, which is not good for your health. I am going to stick with five.

For the past two visits, Marlene has looked from time to time at my computer while I watch my latest recommendation from Joe, the Netflix series Bloodline. There are so many flashbacks that it is difficult to keep it all straight, but Marlene and I have helped each other figure it out. I texted Joe that it was a little confusing and he said it will all become clear. He says he has never given me bad advice, and this is true, so I will have to take his word, since he recommended "Friday Night Lights," "Breaking Bad," and its antidote, "The Office."

Also, it is nice to see Kyle Chandler, who will always be Coach Taylor.

Tuesday, November 3, 2015

What I have, and what I do not have

Today I got the diagnosis for what was making me so sick to my stomach for 20 days, once recently and once in May. It is collagenous colitis,  an inflammatory bowel disease occurring after age 50, in women more than in men. Leave it to me to pick up some weird new thing.

The good news is that it is not caused by graft vs. host disease as suspected, meaning that it would not help to increase my prednisone dose. My lovely new GI doctor said I did not need to take those courses of flagyl and Cipro, although I did need to take the non-absorbable steroid Budesonide, which I now need to continue using until December. Then I can taper.

It is set off my some unknown cause and unfortunately can happen again. But it is benign, so I really can't complain. Oh by the way I have lost about 10 pounds during all of this.

I know what finally made it stop. I kept canceling the pizza mixers at Enfield until finally, with my month running out on my free mixer, I decided to just go, even though I was still having problems. I told Karen at the club that I was going to eat pizza and it would cure me. And sure enough, that's what happened. A scientific study would not find a link, but maybe the pizza scared it out of me.

On another food note, I woke up this morning with a terrible headache. Tylenol didn't work, so I tried Ibuprofen, which finally did the trick. I think it came on last night as I was eating some vegetable tempura to take a break from the chicken stew that I had prepared in an effort to get me through a few days. Living alone, I am not so great about eating a good dinner as I was when Joe was here. I thought some avocado roll and the tempura from Iya Sushi and Noodle would be an inexpensive and healthy alternative to what I had on hand.

Anyway, my rational mind won over when I resisted the temptation to look up "Signs of an an aneurysm," although I just did it and saw that a sudden, severe headache is one. But there are others too, so I feel safe in ruling that out.

Instead, I searched, "Does Japanese food cause headaches" and saw that the miso and soy sauce served with it can be culprits. Since I have had no problems with soy sauce before, I figured it was the miso that came with my vegetable tempura.

So that is what I have and what I do not have.

Saturday, October 31, 2015

On falling down and going forward

These things happened on Wednesday, which I started to write about but forgot to finish.

I woke up thinking about when or whether I would take the Exjade, and then I remembered that I am done. I still haven't gotten around to getting rid of the pills, and it occurred to me maybe I should keep an empty bottle as a remembrance of what I used to have to do on most mornings for some six years. A normal day without having to do it would be an extra special gift.

Then, I went to the round robin in Enfield. Unfortunately, as soon as I got back on hard courts, my big toe hurt again. But I had taken a little ibuprofen, even though I am not supposed to make a habit of it due to its effects on the kidneys. The play was great. At the end, when I was chasing a backhand, I slipped and fell. As I was lying on my back, I asked if I had made the shot. I guess you could say it was a "good fall," compared to some of my others when I hit my head and got badly injured. I had a scrape on my elbow, but I prevented a bruise on my hip from getting too bad because I sat on an ice pack on the way home.

Everyone looked at the smooth bottom of my shoes and said it was time for a new pair. When Karen looked at them up at the front desk, she reminded me that she had sold me a newer pair and I was wearing old ones. It took me a few minutes to remember the cute newer ones with the blue and green accents that my foot and orthotics guru Ken Holt had frowned on when I went to see him about my toe problem. "Just looking at those shoes makes my feet hurt," he said of those and the shoes I had been running in. I donated them to the Y and totally forgot to notice how worn out the tread was on my old pair.

I bought a new pair from Karen and will pop them on when I go to the clinic on Monday.

After tennis when I got picked up for my ride to Boston, I saw that there was another passenger in the car. I think that this company, Sonic Transportation, did not get the message that I am supposed to ride alone, but I wasn't going to make a stink about it. Although not upsetting like the woman who yelled at me, this passenger was disconcerting because she turned away from me and never said a word.

The ECP went smoothly until after the fifth cycle, when the needle started to hurt. I discussed with the nurses the possibility of doing five instead of six, and they thought that was a good idea because it doesn't make a big difference and my vein starts to complain during the sixth. Melissa gave the OK, so that's what we're going to do next week.

It was pouring when I got out. It turns out that the other woman had been finished at Mass General at around 4 and had to wait in the car with the driver until I got out at 7. This seemed like a bad situation for both of them. It poured all the way back. I talked to the driver a bit and he said he had just started, having previously worked two jobs at Rite Aid and Walmart, and he liked this better. Still, a day like that didn't seem so great to me. When we got to my house, I reached into my bag and pulled out a handful of dollar bills that I gave him.

At first he didn't want to take the tip, but I told him many of the other drivers have not been so nice and I felt sorry for the day that he had and he should buy himself a beer or whatever he needed. He said thanks and see you next time.

When I got home I could only have broth and a popsicle due to preparation for my colonoscopy the next day. The less said about that, the better, except that it was nice being driven by the super cheerful Joan Vohl Hamilton, who, afterwards, took me to her house and gave me a big container of warm, freshly made applesauce that was probably the best I ever had.

Monday, October 26, 2015

Missing Ann Gregory on her birthday

Many people feel strange, as I did today, when Facebook tells us to say Happy Birthday to a deceased person.

Today it was Ann Betts Gregory on what would have been her 44th birthday. I posted this morning that I missed her and her beautiful smile, and when I went just now to look at the page, I saw that the remembrances went on and on.

I imagine that it helped her husband, Chris, and the rest of her family, to see such an outpouring of love and heartbreak. Although Facebook has many downsides, it also offers a sense of community at these times. And something useful can come out of it.

One friend wrote, "Ann survived cancer twice because of anonymous bone marrow donors before other complications hastened her death. In her honor, please register with Be the Match, (formerly the National Bone Marrow Donor Program) you could really make someone's life."

As someone who became a friend through our blogs, I know that after those transplants she enjoyed precious time with her husband, her garden, her schoolwork, her kitties, her friends and more.

Most people do not know how simple it is to get on the registry. It only takes a tongue swab, either given at a donor drive or through a kit that you get through the mail by following directions on the site.

An outpouring similar to the one on Ann's page occurred Sept. 9 on what would have been the 72nd birthday of Bill Elliott, a beloved high school teacher of ours at Friends Seminary. His page now reads, "Remembering Bill Elliott."

This topic came up today when some of us were talking about how unnerving it can be to see these birthday notifications. If you go to the Facebook page and see the remembrances, it might change your mind. We wondered how you would change the status of the page.

I looked it up and saw that the Facebook Help Center has instructions on how to memorialize a page.

Sunday, October 25, 2015

What to do with unused medication

People are worried after yesterday's post that I am going to flush my unused Exjade down the toilet.

I didn't really mean it. I meant it more symbolically, if that makes sense. Like, "I'm gonna wash that man right out of my hair."

Don't worry, they are still on my dining room table.

I am going to take them to the pharmacist.

A concerned friend sent this to me:

• A recent study shows that 80 percent of US streams contain small amounts of human medicines
• Sewage systems cannot remove these medicines from water that is released into lakes, rivers or oceans.
• Fish and other aquatic animals have shown adverse effects from medicines in the water.
• And, even very small amounts of medicine have been found in drinking water.

If anyone is wondering about this, the DEA has a whole fact sheet on it.

Saturday, October 24, 2015


Next up, I was going to write a post saying that when approaching the end of a race or tennis match or some other effort, you need to stay strong and not let up. I was going to give an example of the opposite  – when Donna and I had split sets with our opponents at the Districts in Providence and were ahead in the third 5 to 2, and then let up, and lost one game and then another...until we lost.

In subsequent matches, if one of us said "5-2," it was shorthand for "don't slack off."

I was thinking about this recently when eyeing my stock of Exjade (deferasirox) and thinking, as I have done most mornings for some six years, how much I did not want to take any more. But with my ferritin in the 800's the last time we checked, it was the home stretch, and I pushed myself to take it some more.

Five pills dissolved in water every day. Drink on an empty stomach. Feel queasy. Wait 30 minutes before eating. Even the reps who called from Express Scripts were annoying, repeating the instructions s-l-o-w-l-y.

In case you missed it: Exjade binds to iron and carries it out of the body. The price that Accredo charges – $8,114.90 per 30-day supply – is thankfully covered by my insurance. When I felt like skipping, I thought of the risks of the ferritin overload that had resulted from multiple transfusions.

If you are still with me, the point is this: Yesterday I got a call from the nurse practitioner who was covering for Melissa, who was not in the office. She said the prescription had come up for renewal and Dr. Alyea said I was done! I think my ferritin level was 742, close enough to normal and low enough that the small amount of blood loss during ECP will take care of it. I believe that when I started, it was around 8,000. Normal for women is 11 to 307 (nanograms per milliliter).

I psyched myself up on this homestretch for nothing. I guess psyching myself up most mornings for the past six years was enough.

Meanwhile, I have nearly $10,000 worth of pills left. You hate to waste something so valuable, but I'm afraid they are going to go down the toilet.

Wednesday, October 21, 2015

Bugged by pests

My boring, bland dinner
Today, I learned some things.

I learned that the yellow jackets flying around the street-side window in Katie's room are coming from a nest under the roof.

I learned that the cabinet moths that have been flying around my kitchen have a more official name  – Indian Meal Moths – and that the worms that I found in my food  most likely came into my house from the South Hadley Big Y, causing me to think I should go tell them about the money I spent replacing the food that I threw away. Maybe they'll give me a coupon for something.

An exterminator from Terminix told me these things after he went up to get rid of the yellow jackets and extend a bee pole up to take care of the nest. I wasn't happy about calling an exterminator, so I was pleasantly surprised when he told me that Terminix has switched to  environmentally friendly products. He left me a pheromone catcher to trap the rest of the nasty moths; I have been vacuuming them up and squishing them for a couple of weeks. Sweet success: One of them wandered in there shortly after I put it on the counter.

Last night I closed Katie's door and used a towel to cover the gap at the bottom, but not before one of the yellow jackets got out, causing me to stand in my PJs in the upstairs hall, brandishing an old New Yorker. It went into hiding, so I gave up and took Maddie into my room and closed the door and put a towel at the bottom. This took until about midnight.

Another bug is in the picture, and that is the bug, probably graft vs. host and colitis, bothering my stomach for more than two weeks. Nothing I eat seems to sit well. You can see from the photo what I had for dinner: rice and homemade applesauce. This is getting me down.

You would not expect to find the words "happy coincidence" and "appointment with  gastroenterologist" in the same sentence, but those phrases paired when Melissa said them to me after I told her on the phone that I have an appointment at Western Massachusetts Gastroenterology tomorrow morning to discuss my upcoming routine colonoscopy.

It has only been three days since I started taking the new medications, cipro and flagyl, and she said she and Dr. Alyea are on board with giving them more time to work as they did last time in addition to the steroid budesinide, which I have been taking since the first time this happened in June.

I'll be interested to hear what the doctor the has to say.