Tuesday, October 17, 2017

After a bad day in Boston, a better one

Talking up a storm at home away from home
After the dismal day with the mixed up transportation last Wednesday, things looked up the next day. Determined not to spend too much money (by taking an Uber or a cab) to get back down to Dana-Farber from Newton for the UV light treatment, or ECP, I took the T to Longwood and walked about 10 minutes.

It was easy peasy and actually fun to be at 9 a.m. instead of my usual 4 p.m. with a whole new crowd of graft vs. hosters. It was a full house. When a nurse called out the patients' names to another nurse to show that all beds were accounted for (six I think), it sounded like names in a line of school kids.

The woman next to me didn't stay long. They couldn't get the needle to go in deep enough for the treatment. She was cheerful enough, though. They did get enough for a blood count. It made a big splat on the pillow. She reminded me of me because before she left, she wanted to take a picture of the splat to show her daughter.

She told me she comes once a month and has been at it for seven years. She started like I did, twice a week, and reduced gradually from there. So comparatively, my two years is not that long. It's hard to imagine continuing for that many years. But a doctor told me when I started that many patients are so happy with the results that they prefer to come back for touchups rather than going back to having tight or itchy skin, common manifestations of graft vs. host disease of the skin, one of the side effects of bone marrow transplantation.

To recap: Mine started with hardened skin (abdomen like a bowling ball) and indentations that look little pockmarks, ripples or dimples on thighs and stomach. Progress is hard to quantify because you don't have a number or a specific marker on which to base change (or lack of it.)

My skin has definitely gotten softer, which is good because if the condition is left untreated, the skin can harden even more in a dangerous way that inhibits motion. But it is still not smooth. And a hard area like a low-slung belt gives the sensation of a band under my abdomen. It could be worse because a nurse told me that for some patients, the "band" is higher up and they feel like they can't breathe. Still I don't like the way it pushes my stomach out.

There are two parts: how I feel and how I look.

The first part is the most important. I feel like I am moving much more freely and have better flexibility and balance. My hands aren't puffy anymore, and my skin overall is less constricted. It shows in yoga, tennis and walking. Our coach, George, asks what they are putting in my veins.

On the negative side, the feeling of a band around my stomach can get really uncomfortable. My skin on certain areas still has the dimpled look, and not on my face, where it might be cute. You wouldn't know it unless I pulled down my pants or lifted up my shirt to show you. (I showed a friend when we shared a dressing room and she could have done without it.) Last summer when I visited a friend in Florida and put on a bathing suit, she asked, "What happened to your legs?" Apparently it might never totally smooth out again, but it is supposed to gradually get better, or else I wouldn't keep at it.

I told my nurse I might not take my oxycodone because I wanted to read. She said why not just do it. I did and was glad because she couldn't get the needle all the way in on the first try. You can tell when it's not a "good" stick; it's a deeper pain and lasts longer than the discomfort that usually wanes when it goes into the vein as it's supposed to.

She got it in on the second try. Having taken the oxycodone, I read the same pages of my book, Anna Quindlen's Miller's Valley, over and over. The "oxy" makes you more talkative. And leads to a goofy look that you can see in the photo.

The rescheduled ride back home worked out, with the driver actually showing up on time and not being too strange, although she did talk on the phone most of the way.

Back home, I lay down on the couch and couldn't decide if I wanted to wake up or go to sleep. I dozed for a while. Needing to make an appointment for the Mohs to remove the basal cell in my outer ear, I looked at my tennis schedule to see where I could schedule it to have to get the least amount of subs. I asked the dermatology scheduler how they do it. She said the doctor would explain.

It's not usually productive to look things up. But I looked up skin cancer of the outer ear to try to get an idea. Some photos came up that made me say eeeeeeuuuuw. I was sorry that I looked. It's hard to imagine because the area has so little skin. Apparently the doctor scrapes it one layer at a time.

I was happy when a friend said she would take me. So at least I won't have to worry about the transportation.

"I hope I do a better job than the others!" she wrote in an email.

No doubt she will.

We are talking about doing a little shopping afterwards. It is fun to have to tack something fun onto a potential ordeal. Or the idea of it, anyway. If they do just one pass it might work out.

On the other hand it might be like when I was preparing for my colonoscopy and I called my mother and said I felt fine and might go out to the store.

"Just you wait," she said, or something like that.

Obviously my shopping trip didn't materialize.

But you never know how things will turn out.

Wednesday, October 11, 2017

Transportation screwup and another skin cancer

In the matter of getting to Dana-Farber, just having a nice driver doesn't guarantee a good trip.

Today's is up there in bad trip land. Because I got to Boston but didn't get the procedure. That's because we were almost an hour late.

My mistake I guess for being accommodating to the vendor. Due to past rides with crazy people, my paperwork with MART says I'm supposed to ride alone.

The day started out great with tennis at the Canoe Club. We had two courts and mixed in drills with snacks, stories and playing...our camp for grownups continues until we're too cold to stand it. At our last outing last year, we were bundled up in coats.

The driver arrived at 2:15 for my 4 p.m. appointment, a little late (I allow two hours) but no biggie. The first sign of trouble was when he said the other passenger to be picked up lived in Springfield. I said we would not make it to Dana-Farber by 4. He said he had looked at his GPS and was certain that we would.


We got to the apartment complex around 2:45. He couldn't find the exact apartment. Got on the phone and talked to the woman and drove around for another 10 or so. I entered the location on my phone and saw that we would get there at 4:50. Called the Kraft Blood Donor Center. They  said what I already knew, which was that I would not get there on time for the light therapy on my skin, aka ECP. They could take me tomorrow at 9 a.m.

When I saw we weren't going to make it, I wanted to say to just turn around. But I couldn't do it because the other person had to make an appointment in Boston.

I called my sister and asked if I could stay over. She said they would be around and of course the answer was yes. (I lucked into a good dinner, at least.) Called the owner of the company and asked if the driver could take me to my sister's instead of all the way into Boston for an appointment that I wasn't going to have. She said they can't take me anywhere except an address listed on my PT-1 forms, which are like a prescription for my trips. I said OK, then take me to 850 Boylston St., my dermatologist's office, which was on the way to Boston so the other patient could still get to her appointment but closer to Newton and therefore easier for me.

This is like trying to get an Uber driver to go to a different address, only worse.

She said I had to call MART. So I called the customer service line and waited for a long time before anyone picked up. As per usual.  Stated the problem. Filed a complaint, said it wasn't the driver's fault but the owner should know how to read a map and know that a detour to Springfield would not leave enough time to get me to my appointment.

I asked about changing the location of my drop off. She said this could not be done. I would have to cancel the current trip in the car that was pointlessly bringing me to Dana-Farber and book new trips. But she could not do that. I would have to call the reservation number. Wouldn't you know that I was basically crying at this point. Nobody died, but at the moment that doesn't lessen the frustration.

Oh and during that same car ride I got the results of biopsies in my ear and on my thumb.

The one on the thumb is squamous cell (in situ, or on the skin) and can be treated with effudex, a chemotherapy cream. The one in my ear is a basal cell. I will need another Mohs on it. I don't see how they take it out by layer because there is hardly any skin there.

Call reservation number. Wait on hold. Finally get an answer. The only place the driver can take me is  to Dana-Farer. I can wait there until my planned pickup time (7 p.m.) or get myself to my sister's. If I go to my sister's and cancel that ride, I will have to book a new ride home for tomorrow. I say to book the new ride home at noon tomorrow. The woman says that without a three day window, they cannot guarantee a ride. I ask if they were just going to leave me there. She says that in all likelihood I will get the ride. But she has to explain. Just in case. Just in case what? They leave me there?

The driver leaves me off at Dana-Farber. He says he is very sorry. I say it's not his fault.

I go up to the eighth floor and page Melissa. I have no pills for the night or the morning. The last time I skipped gabapentin I had severe withdrawal symptoms. Melissa says she can call in the RX to the Newton Highlands CVS. he arranges for me to get a voucher for a cab. It was $27 so I'm glad I didn't have to pay.

I don't know what I would do without her. I was going to say she is a saint except that Jews don't believe in saints. But you get the idea.

I get a message saying that I do have a ride home tomorrow.

In the morning I'm going to take the T back down to Dana-Farber.

I can't believe I even wrote this because I am so drained.

The wear and tear.

In the middle of dinner I heard a text. It was an image of Katie turned into a cat. She must have gotten what the kids used to call ESP-N. Maybe she knew that I was upset.

I played it like a gazillion times. It made me smile.

Sunday, October 1, 2017

Don't count your chicken's before they're hatched

I think I might have jinxed myself the other day when, after the driver taking me to Boston checked in, I wrote on Facebook, "Encouraged because driver checking in with me about my ride to Boston later today sounded normal and polite. #Settingalowbar."

It wasn't that the driver was rude. It was just that he never came.

He called around 2 p.m., the time when he was supposed to be here to leave for my 4 p.m. appointment, to say that he was sorry but he would be about 15 minutes late because another driver got two flat tires and the boss insisted he drive someone to Holyoke before coming to get me even though it would make him late for me. He told me he hated the late-day shift and hated that the owner of the company made him do this and he hated to be late. He said the owner told him that he would still be able to get me there on time.

I told him not to worry. I have heard this about the car company owners before. They squeeze in more rides than they are able to do without regard for the passengers or, for that matter, for their drivers. Although I could have done without the rant about the shift since I had problems of my own.

In any case, when he didn't show at 2:15 I took my things out to the car in case I ended up driving myself as happened not too long ago. Around 2:25 I called MART, the agency which arranges the rides, and got through to the complaint line. (A miracle.) The operator put me on hold and said she had gotten through to the driver, who said he would be here in about five minutes. She filed a complaint for me and said to follow up if I never took the ride because then the company wouldn't be paid.

Tears of frustration welled up in my eyes. It wasn't just about the drive there at a time when I was tired. It was also about the ride home the next day (after an overnight) when my dermatologist would have zapped or biopsied who knew what. And it was about the time spent arranging three rides (including one from Dana-Farber to Diane and David's that night) and the time that I would need to spend undoing them.

Five minutes passed. I called the Kraft Family Blood Donor Center and said I would be late for my bi-weekly blood treatment, aka ECP,  and asked if it still made sense for me to come. The nurse said that I should come even though I would get a shortened treatment. I got in the car and left.

At 2:45, when I was on my way, the driver called and said he was on Woodbridge Street but couldn't find my house.

I figured that if I stopped and got coffee, I would be even later, so I pushed on through. I did pretty well except for, near the end, missing the left turn towards the Prudential Center and instead taking the Copley Square exit, adding an extra 10 or 15 minutes to the trip.

By the time I got there it was close to five. They always take my blood pressure. I suggested maybe they wouldn't want to. Actually it was quite low, 120-something over 70-something. I guess my body had figured out a way to cope with this situation; I had been there before. My nurse said some treatment was better than no treatment. So inserted the needle and hooked me up. It didn't take long for me to fall asleep.

After an overnight in Newton, I got up early and went to yoga with Diane. It moved a little faster  than most of the classes I take, but I kept up. I confess to looking around at the trim Newton bodies but turned my focus onto myself. (Or tried to.) When walking to the car afterwards, we discussed our problem areas – Diane's knees and my hands and wrists. My left hand especially will not flatten, and my hands and wrists will not bend at the usual 90-degree angle. I have been told this is mostly due to my graft vs. host of the skin,

Diane pointed out that what I can do is amazing: yoga, tennis, running, riding my bike. She reminded me that at one point I couldn't even turn over in bed, let alone walk. I said it had crossed my mind when I took a shower at their house that morning and remembered when I had to struggle to get into the tub and sit on a shower chair so Diane could give me a sponge bath.

Sometimes I forget. I thanked her for the reminder.

Then I changed and went to Chestnut Hill for my dermatology appointment with my friend Dr. Lin. I got stuck in Route 9 traffic and was worried about being late. As it turned out, she was running late, which I should have guessed. I was just falling asleep in the waiting room when I got called.

She zapped pre-cancerous areas on my neck, face, lips and hands. Not pleasant but we chat our way through it, with an occasional yelp escaping from my mouth. She did a biopsy on an area on my thumb (possibly squamous) and also one on the inside of my ear. She thought this one might be basal cell. Probably nothing horrible but if it is cancerous, I will need a Mohs surgery on it. This strikes me as not a great spot.

With my stinging and burning skin, I would have appreciated a ride home. But it was not to be. On my way out I did my usual pass through Waban, where there is a conveniently located Starbucks. First I pulled into a shady spot and fell asleep in the car. Then I went to Starbucks and got an iced coffee, followed by a stop across the street at Barry's Village Deli for half a corned beef sandwich to go.

Due to my training in the news biz, I can eat anything in the car.

It kept me busy and alert until I got home. By then the local anesthesia had worn off on my thumb and in my ear, and the zapped spots were burning. I took a little something and called it a night. The next day I made sure to call MART to say I never got the ride. When it comes to those rides, I will no longer count my chickens before they're hatched.

Monday, September 25, 2017

On the road by bike, car, train and foot

With transplant recipient Mary Turnullo in Danvers
Yesterday I was dragging my feet when I walked down to Tailgate Picnic with Maddie early in the morning.

It was already getting hot, but we had a pleasant time sitting at an outside table. I had coffee and a freshly baked blueberry muffin. Maddie had a little of it and some water. A golden Retriever looking a lot like our friend Theo came over with a mother and son. The dog got up on the bench and sat next to the son. It seemed to be part of their morning routine. The two dogs sniffed around.

I wanted to bring my Sunday New York Times, but it hadn't arrived, so I tucked a New Yorker under my arm. Most in my age range will get a kick out the Shouts and Murmurs, "Our Parents are our Future," written from the point of a millennial having to cope with their doddering parents.

On the short walk home I wondered why I was moving so slowly and having trouble doing even that. I attribute it to the increased dose of gabapentin (Neurontin) that my new neurologist recommended. As I wrote in my story about the pain of having and treating neuropathy, fatigue is a common side gabapentin side effect.

When I got home, the paper had arrived. I took all my stuff and put it on my grandmother's coffee table next to my couch. Maddie came in and settled down on the living room floor. I fell asleep and didn't leave the house as the temperature rose. Later when it cooled down, we did the afternoon version of the morning Tailgate expedition, this time going to The Thirsty Mind and sitting outside, me with iced coffee and Maddie with water...and a piece of my cookie.

It was a deeper fatigue than the kind caused by running around doing things, but all my activities in the preceding week probably contributed.

I have been especially busy since last Sunday, when I went with Margaret on a bike ride starting in the town of Danvers to benefit cancer research at Beth Israel Deaconess Medical Center. The ride through surrounding towns was only 10 miles, but it was hilly and my first time back on the road since my accident. We made light of doing only 10 miles, but with the hills and traffic to contend with, it was challenging enough for me.

I had ridden several times on the bike path though I only took my bike out of the garage late in the summer. Having neglected it, I was glad to hear of Margaret's plan. When I told Katie that I was going to graduate off the bike path, she asked, "Who signed off on that?"

It's good to have kids who watch over you. I laughed and said that Margaret signed off.

The event honored a Beth Israel Deaconess patient who received a successful stem cell transplant for acute myeloid leukemia, or AML, the same blood cancer that I had. I talked to the patient, Mary Ternullo, and discovered that we have a lot in common, including side effects.

Mary had signed up to walk, as had a friend of hers who also had a transplant. The friend's side effects were among the worst I have heard of. She has ocular Graft vs. Host disease, causing her tears to dry up. I'm not sure of the exact reason for this, but she has also lost her sight.

Yet wearing sunglasses as we talked at the picnic-style lunch after the ride/walk, she cheerfully talked about her grandchildren and asked me about mine. We fell into the same kind of banter that I used to have with my late friend Patricia, comparing numbers of teeth lost and long waiting times for the opthamologist we both see.

The three of us stood together and declared ourselves stem cell sisters happy to be alive on a beautiful day marked by good cheer.

Back home, after a few days doing the usual things, I took off for the "old country," New York, to celebrate Rosh Hashanah. This meant driving to Fairfield and taking the Metro North Railroad to Grand Central.

I got in at just about the right time to visit my Aunt Marge, who lives near the United Nations. With the UN in session, the area is filled with Diplomat license plates and police barricades. I brought over a round challah that I picked up in Grand Central. I said, echoing my father, "Here's to a year with no sharp edges."

Later that day I said it again at a family dinner at my cousin Betsy's in Queens. (From the upper east side, easy peasy, the 6 train to 51st and change to the E.) The next day, brunch with another cousin at Tom's Restaurant , (of Seinfeld fame) near where I was staying at a friend's house on the Upper West Side.

My cousin drove me from 112th Street up to 125th Street so I could leave from the Harlem/125th Street station. But she didn't want to go all the way east, so I decided to walk from Riverside Drive to Park Avenue. (2.1 miles, but I didn't know it at the time.) I don't know what came over me. (Well yes, I do.)

One hundred twenty-fifth street was lined with sidewalk vendors, like one big street fair. Dragging my suitcase and wearing my pink baseball cap, I must have looked like I blew in from Oklahoma. Nobody batted an eye. By the time I was so hot and tired that I realized I should have taken a cab, I only had a few blocks left.

I made the next train out by a mere three minutes, dashing up the stairs rather than risk the temperamental elevator. (Good thing I didn't belly flop onto the train like I did in the Paris Metro.)

Once back in Fairfield, I decided to walk to Ben's house from the train station (.08 miles).

It being Friday, I got caught in traffic on my way home. It took almost three hours for a trip that normally takes a little more than half that.

So I guess it's safe to say that all of this contributed to my fatigue.

Friday, September 15, 2017

'Running for My Life' earns best blog award

I'm not that big on promoting myself, though I guess I should be. That's how freelancers get more work.

It probably stems from my reporter's sensibility that you don't make yourself the focus of the story.

Well that was then and this is now, and we displaced journalists trying to make a go of freelance writing have to market, pitch, and promote.

In that spirit I forgot to say that for the second year, Healthline.com gave me a best leukemia blog award. I heard the news early last month. I was honored to get it, as I was last year. Sometimes I think of stopping, but then I hear that a post has made an impression on someone or I get an idea for a blog post and off I go. Nine years already.

"We’ve carefully selected these blogs because they are actively working to educate, inspire, and empower their readers with frequent updates and high-quality information," according to the press release that put mine in the top 10 leukemia blogs.

For people living with leukemia, those who know them, and those who have lost someone to the disease, support can come from many different sources, including these incredible blogs," it continued.

The editors wrote this about my blog: "Though she was cured three years ago, Ronni continues to face a host of 
chronic side effects, sharing her continuing struggles with the after effects of the disease on her compelling blog."

You can read the rest of the release and the list of the top 10 blogs here.

Healthline is a health information site with more than 40 million visitors a month.

Wednesday, September 13, 2017

Fun with kids and at Dana-Farber

Minnehaha Falls, Minneapolis
After a couple of downbeat posts about neuropathy and nightmares, it's time for some (mostly) fun stuff.

I had a great four days in Minneapolis with Katie, arriving home Monday feeling beat but feeling good.

It was sunny and warm, great for swimming in Lake Nokomis, riding 10 miles round trip along the Mississippi on the Grand Rounds Scenic Byway and stopping for our selfie at Minnehaha Falls (first time in a long time on hills but granny gear served me well), walking in parks, drinking coffee, eating out and hanging out, having lunch in Saint Paul with our friend Marysue Moses, enjoying my fabulous Airbnb, going to lively Shabbat services on Friday night, and going on an adventure to picturesque, artsy Stockholm Wisconsin,  about an hour and a half of a scenic drive away.

I love Minneapolis. Parks and lakes all over the place! 

Found Joe at the Open
It can be pretty hard to track down all three kids in the same general time period, but I accomplished it by seeing Joe briefly when he was working at the US Open while Donna and I were there, and by going with Ben and Nell to the beach in Fairfield on Labor Day and also saying a quick hello to Meghan and baby Callen. 

Long-lasting feel-good moment: Nell holding my hand when going down to the water and saying "Grandma jump" when we were jumping in the (small) waves.

Today it was back to the medical grind: checkup with Melissa followed by ECP. It is not exactly a grind because I love seeing Melissa and spending three hours with the fun nurses at the Kraft Family Blood Donor Center. But it is a time sucker. I did get to play tennis but cut it so close (not wanting to leave the Canoe Club) that I didn't take a shower. (Sorry, gross, I guess.)

Ben and Nell at the beach
I am farblondjet over the neurologist's instructions on what to do about the neuropathy. I shared my confusion with Melissa. The neurologist said to increase my gabapentin at night, so I took three 300-milligram tabs at night as opposed to one, per her instructions. That was Monday. 

Yesterday morning I felt drugged. It was my first day back at The Literacy Project. I was embarrassed because I couldn't keep my eyes open. It was like being back in school and hoping the teacher didn't see me. There was probably some leftover fatigue from my trip, but I don't believe that accounted for such intense drowsiness. Melissa said to take  two instead of three and call the neurologist. My feet only tingle when I'm still, so maybe the solution is to run around all the time. 

While I used to live by my counts, these days I mostly just ask how they are. She said they were excellent, and that was good enough for me.

Selfie with Francisco 
On  my way across the bridge to ECP, aka the blood treatment for my graft vs. host of the skin, moved to 4 p.m. now, I was happy to bump into one of my favorite doctors, infectious disease specialist Francisco Marty. He has an actual infectious smile. Even when I was super sick, I smiled when he came in.

He is also as excellent photographer, as you can see from our selfie. 

At ECP, my nurse had trouble getting the needle in. Ellen, the PA, came over to distract me. It hurt for a little bit but then settled down with help from a heat pack. 

It can be a lot of fun over there.

One of the nurses started to crack up over Ted Cruz's account liking a porn tweet. She came over to my bed and reported that Cruz's college roommate said that based on Ted's behavior back then, he was not surprised. A couple of others came over.

Two residents stopped by to chat. I'm as interested in them as they are in me, and hearing their stories helps pass the time.

We were three patients with four nurses, busy monitoring us but also with time to talk. I'm getting to know them as friends. I bring my laptop, New Yorker and a book, but sometimes, like today, I'm so busy talking and laughing that I don't even take anything out.

All in all it wasn't so bad.

But getting home after 9 at night, and then eating and writing this, and ending up staying up too late, makes for a long day.

Thursday, September 7, 2017

Getting out of a couple of binds... in my dreams

Is it a good dream or a bad dream when something terrible happens and you get out of it?

Subconscious themes merged with images of cars submerged in water in hurricane-ravaged Texas.

I dreamt I was in the car talking on the phone when suddenly I came to the end of the road and said I had to get off the phone. Not sure who I was talking to, but it was too late to stop. The car slipped into the water. (Possible note to self to stop talking on phone in car?) The car turned into a boat. The boat developed leaks. (Oh wait, a friend said she is writing a book about shipwrecks, about leaky boats, so maybe I stole her dream.) I escaped from the boat, swam away and walked out onto a road.

I wondered if I should tell someone about the submerged boat. I figured I could get away with it because nobody would know it was me. But I felt bad and went back to look for it. Workmen were putting it back together. All was well.

Although I got into deep water, I found a way out.

According to this post about car wreck dreams, those where you go into water have a specific meaning: "When your wreck involves water or you dream about a submerged car, it's possible an emotional issue burdens you. In dreams, water is said to represent feelings, so to crash into a river or lake might mean you've been taken off course by an emotional issue."

But wait, during that same night I went to work at The Republican, thinking everything was fine until Mimi and Mary came over and told me I was topless. (Mimi says I should stop having these nightmares about work already, but my subconscious hasn't gotten the message.) I had work to do but figured I had time to run out and buy some clothes. I didn't think it was so bad but I didn't want to get in trouble. I was going to miss lunch but figured that emergency shopping took priority.

What do those naked dreams mean? According to this post the Dream Well, it depends on how you feel about it. (I didn't feel so bad.)

"The degree of discomfort we feel in a dream where we are naked in public is important," according to the post. "Feeling suddenly caught off guard, but not deeply upset by being naked in a dream is likely related to a shorter term or more recent life event.  A dream like this may be about feeling vulnerable as we experiment with a new situation, such as a new job or relationship."

Things are going well in something new. But it is challenging to teach an old horse new tricks. Plus you end up revealing your scars, and I have plenty of them.

Or I could just be dreaming about neuropathy.