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.

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.

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.

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.

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.

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.

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.

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.

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."

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.

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.

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.