Wednesday, February 28, 2018

Time for a double helping of alphabet soup

Today I had ECP.

Tomorrow I have PDT.

Time for alphabet soup in Boston.

OK, so by now you might be familiar with ECP. It's extracorporeal photopheresis, the internal sunburn, the UVA light therapy treating my graft vs. host of the skin. The blood burn. The thing I do every other week when I complain or mercifully don't complain about the drivers.

I was relieved to get a nice, polite one today. Two weeks ago another driver was late and rude. I started to get worked up. But Katie, who is home in between engagements, said, "Everyone calm down."

She told me she would drive me, which she did, and I had no complaints.

I went earlier today, at 1 instead of 4, so I could go to a community potluck for the content marketing company, Skyword. I want to write for some of their clients.

Over at the Kraft Family Blood Donor Center at Dana-Farber, I'm getting used to doing two needles. It takes two hours instead of three or even four. Not that I dislike the company – the nurses have become my friends – but I could think of something better to do than lying still with a needle, or needles, in my outstretched, immobile, arms. I passed the time by watching an episode of The Crown.

Then I took an Uber to Diane and David's so I could change my clothes and leave my bag before heading out to the WeWork shared working space near South Station.

Because we had gotten into traffic, I didn't have that much time for a turnaround, so I ended up taking another Uber. I hope I get some content writing so I can make up for those costs. It was a fun event in which I talked to some interesting people and went to a workshop on how to boost your freelance writing business.

It's a good thing I was wearing long sleeves: I had a bandage wrapped around each arm underneath my elbow, where the needle went. Pink with purple hearts. A good combination.

Determined not to take any more Ubers, I walked across the street from the cool WeWork co-working office space to South Station. Treated myself to a kids' size Pinkberry and thought about how nice the train station looked compared to when I moved to Boston eons ago and was mugged on a dark commuter rail platform...and called my father crying.

Tomorrow I have PDT, the face burn, or photodynamic therapy, in which Dr. Lin, or rather her assistant working a machine, burns the top layer of skin off of my face to head off any lurking skin cancers and get rid of thingies that are on the surface of my skin. In the long run a better alternative to zapping them but not fun while it is happening.

To recap, it feels like the worst sunburn ever. But you move a handheld blower around your face and think of something else and it the time goes by. I can't remember the exact time, but it is less than 15 minutes.

Then out to lunch and then back home to finish a writing assignment. I'm working on three stories in between all this medical stuff this week.

Oh, and on Monday I went to the dentist and found out that the enamel is wearing off on the outside of my "good" chewing side and I will need two root canals and two crowns.

I'll think about that tomorrow.

Saturday, February 24, 2018

The time I went way down & came back up

My home away from home for more than 3 months
Consider these blog entries, written by my sister when I was in the hospital after my fourth bone marrow transplant.

They are tucked into a March, 2009, post headlined I'm still here, in which I wrote, 

This is the first time I've been able to look at my computer for a month. Sorry I kind of disappeared; I was pretty much out of it although I'm starting to come back. I'm going to let Diane do the talking. She fished around and found some e-mail addresses where she sent updates. 

Diane said: Thank you for your calls to Ronni’s room and cell phone, and for the many emails you have sent to her recently. I have retrieved some of the messages and I wanted to send this message to let you know her status. At the moment, she is not answering either her cell phone or room phone, and is not able to check emails. She has suffered some complications due to various factors and is not alert to talk. However, since yesterday, there are some signs of improvement. The doctor told me this morning that ‘we are not out of the woods’ but there are some encouraging signs – better blood counts, stable heart rate and blood pressure, and some indications of better kidney functioning. The 3 kids and Jim were there today even though I know she didn’t want them to see her as she looks right now, but I felt it was important, as did they, for them to come.

Many of you have called or sent messages for information about Ronni so I am sending this as an update.

As I said before, she has had many complications, the most pressing of which is kidney failure that has led to a number of other problems including fluid build up in her lungs and as well, she is now in a form of a coma. Last night they moved her to the ICU where she is being closely monitored, awaiting a special bag of platelets (which were supposed to arrive yesterday at 4:30 but are being held up at the Red Cross and won’t get there until 4pm today.) At that time, they will begin dialysis with the hope that it will take off sufficient fluid to help regain consciousness.

On the positive note, her white count doubled since yesterday, which shows some signs of hope that the transplant is proceeding well. Her vital signs are stable. She is a real fighter. Her children saw her on Friday when she still had some level of consciousness, and she knew they were there for which I am very grateful.

Ronni was moved yesterday from the ICU back to the 6th floor – pod 6A and is in better condition. Her vital signs are stable, her white count and platelets are up, and the doctors are pleased with her progress overall. She has now had 2 rounds of dialysis and they see some improvement from this process, particularly in the fact that she is more alert. She opens her eyes occasionally and can follow some commands, but is still not talking and not fully conscious, yet it is progress.

On the other hand, she continues to have multiple complications – infections, fevers, problems with blood pressure, kidney failure, and GI bleeding… some of which is under control or being treated through dialysis or medications, and some that is being tested further.

The team of doctors are superb as are the nurses on her floor which are close to being in an ICU type setting. She does have periods of being alert and wants her phone, books, and computer back – all of which is a good sign but I’m sorry to say she is a long way from being able to access them. I don’t think she is in any pain, but is very weak and asleep most of the time.

We (Ben, Joe, Katie, Jim, and me) had a long meeting with the oncologist today. I wanted her children in particular to hear directly from the doctor what we are dealing with and what the treatment plans are. There are many elements that are being addressed individually and collectively. We are taking each day as it comes while being fully aware that things can turn for the worse at any moment. The kids will come back tomorrow for a visit as well.

Hi All,

After 3 very difficult weeks, Ronni is finally showing some signs of recovery. I don’t want to get too far ahead of myself here, but there are several good things, and yet of course a few challenging ones as well.

On the positive side, her white count has been stable and normal for a few days. She is engrafted, which means the transplant part of this ordeal has worked, for now. They have an interesting method of figuring out how much of her cells are from the donor and how much are her original ones – called a chimerism study (sp?). She is now 100% donor which is fabulous. I don’t think she ever got to 100% in the prior transplants. Other good news – after multiple studies of her gut and liver and other things, they have not found any new signs of problems.

There are some issues they are still following and treating, namely her kidneys are still not working. She continues to have dialysis every other day and that is definitely helping, but they are hoping after another 2-3 weeks, they will see signs of kidney recovery. Her heart rate has fluctuated as well, but it is being treated. And the damn CMV (a virus she has battled off and on for a while even before this transplant) is back, but also being treated.

All together though, she is making progress. Tonight for the first time in about 3 weeks she had something to eat – pureed fruit and yogurt – and not much of it, but nevertheless, it was food.

I wouldn't have delved back into past blog posts had not Joe sent a text marking the significance of the Feb. 22 date and his associations with it. It was the date that Diane called the family back to the hospital to say they weren't sure I would make it through the night. 

It's not like I can forget what happened, but nine years is enough time for me not to remember every significant date. It's interesting to be reminded and to compare and contrast.

This Feb. 22 was that crazy hot day. I played tennis, had coffee and a treat with Donna, then worked on some writing projects and walked the dog. I had dinner with Katie at Iya Sushi and Noodles , and then, because it felt like summer, topped the day off with an ice cream Sunday.

Back in the same time period nine years ago, I couldn't even turn myself over in the bed, let alone think of eating an ice cream sundae. 

Friday, February 16, 2018

Gone to the dogs...but in a good way

With Jen Reeder, dog writers association president
I wasn't planning on going to New York to pick up my "Inspirational Feature" award at the Dog Writers Association of America's annual banquet, but an email from the organization's president changed my mind.

She offered free food, a reporter's dream!

Only kidding, sort of, because the banquet cost more money than I wanted to spend. It was the content of the email itself that moved me to pack up my dress clothes and do something difficult for a freelancer: get dressed up.

She wrote, "Congratulations on winning DWAA's inaugural Harrison Stephens Inspirational Feature Award for 'A Favor Returned.' It is a truly beautiful, moving piece. Harrison Stephens was my grandfather, and my parents sponsored the award. All three of us wept reading your story and felt he would have been delighted and honored that your piece won. I wish he could have read it!

Anyhow, my parents were asking if you would be attending the DWAA banquet on Feb. 10 in New York. If you're considering coming, they would like to pay for your banquet ticket so that you can attend if you like. "

I was so moved and honored that of course I went. A friend went with me for a whirlwind one-night stay at The New Yorker hotel, where the banquet was held.

It coincided with the Westminster Dog Show, held across the street at Madison Square Garden.

So when we walked in the lobby, we saw a strange sight of dogs milling around with their people. At first I thought they were going to attend the dog writers' banquet, and I had a vision of tables set for dogs and people, bringing to mind a memorable dining companion that Carrie Bradshaw has during her Paris visit in Sex in the City.

Actually we were seeing show dogs either going to or returning from Madison Garden.

We did have the pleasure of sitting at the AKC table with my editor from Family Dog, the AKC's magazine and the one where my story about Maddie ran. (Refresher: It was about how my kids and I helped Maddie heal after she was hit by a car, and how she helped me heal after I was hit by a leukemia relapse.)

The editor brought her dog, a well-behaved big dog – a Leonburger – named Emily. The dog didn't have her own chair, though. She lay down quietly next to the table except for when she being lavished with attention.

I never saw so many people passionate about dogs, and it was a lot of fun to be around them.

"America's Veterinarian," Dr. Marty Becker, gave an informative and entertaining keynote speech, and David Frei, the voice of the Westminster Dog Show until last year, gave a gracious and entertaining speech after being inducted into the Dog Writers Association Hall of Fame.

My award came with a $300 check. Katie asked me how I was going to share it with Maddie. I started by getting her a soothing oatmeal bath at the groomer. Next time I go to Dave's to get her dog food, I'll come up with something extra special.

Here is a link to the digital version of the story. The photos by my colleague and faux cousin Michael Gordon are also prize-worthy. It was so much fun working together, like back in the day at The Republican and its predecessors.

I have another dog story in the works. Who knows, maybe I'll become a dog writer.

Friday, February 9, 2018

In a lather about prescription hand cream

The other day when I sat in my car a long time before coming into the house, Katie asked me what I was doing.

A few weeks ago, it would have been that I was frantically playing Words With Friends. I enjoyed the way it allowed communication with people I don't usually see, but I was getting obsessed with it, playing in almost every possible spare minute, to the point where I began to wonder how much reading or work I would have done in the period that I was trying to get the highest scoring word.

I looked up Words With Friends and addiction and my suspicion was confirmed. I was addicted. I'm tempted to go back because I miss it, but it wasn't good for me.

No, I was looking at my hands and getting worked up about my inability to get a prescription that I need. I got it before, not easily, so was hoping to I get it again. I've been squeezing the last little drops from my old tube.

As directed, I applied Efudex (trade name florouracil), a chemotherapy-type cream, to my hands, nightly for three weeks, wearing gloves to help the drug do its job which, to tell the truth, I'm not sure I'm explaining correctly. It activates precancerous spots so that my hands were filled with raised red blotches. Some have faded to brown while others are still red.

To calm my skin down and smooth over the remaining little annoying and (to me) unsightly bumps, I'm supposed to apply Retin-A (tretinoin), which increases skin cell turnover and is used to treat acne. The rub, so to speak, comes into play because it is also used to smooth over wrinkles. You can buy it over the counter for a tidy sum.

Therefore you have to jump through hoops to get a prescription even if you really need it.

The first time through, the insurance company rejected it, bouncing it back to the doctor for Prior Authorization. Which could otherwise be called PITA (Pain in the ass). The doctor must provide a compelling reason for the insurance company to grant approval. This often happens with an expensive drug. It is a way for insurance companies to minimize costs. Some see it as a way for them to get out of paying; doctors and patients often give up.

I inquired Wednesday at the pharmacy and learned that after they sent it back to my dermatologist for prior authorization in September, they hadn't heard anything. They assumed that meant it had not been sent.

I sat down right there and emailed my dermatologist and my nurse practitioner, Melissa, who seems to magically fix things that other people are unable to take care of. This was taking so much time that I was frustrated almost to the point of tears.

Melissa wrote that she would send in the prior authorization again. She asked for a diagnosis, which my dermatologist said was actinic keratosis. These can turn cancerous, so my concern is not just cosmetic.

Yesterday afternoon, the dermatologist's nurse called and told me it was rejected. She also told me some over-the-counter alternatives.

Later that day, Melissa emailed to say it had gone through.

So the nurse must have been talking about the rejection on the first go-round without knowing that Melissa had succeeded on the second try.

Today I picked it up my new tube. It is strong stuff, and so to start with, you apply it only every three days, soothing with Aquaphor in between.

"Success!" I exclaimed, waving my precious treasure in the air.

Pharmacist and technician grinned.

"They just want to make you give up," I said.

He nodded his head in agreement.

But I didn't give up.

It's the little things.

Thursday, February 1, 2018

NY trip, birthday celebrations, & random tears

If you took one of the nines away from the balloons at my Aunt Marge's 99th birthday party Saturday, you would obviously get one nine, which is the number of years that as of Monday had passed since my fourth bone marrow transplant.

It was preceded by a fabulous weekend in New York, complete with seeing cousins and a new baby at my aunt's party; seeing Waitress for the fourth time (because my California cousins were coming to see their friends Sara Bareilles and Jason Mraz on stage); getting to go to the show with them and wth my daughter-in-law, Meghan, and seeing it through a new set of eyes; dinner at a nice Italian restaurant; two trips to Junior's for cheesecake; two free parking places; getting a last-minute ticket to see John Lithgow; hanging out with Bruce and Jeanne; running 4.8 miles from their apartment to the reservoir and around and then walking another mile looking for the right croissant...and then of course driving home, a logical followup to driving into the city, though not as much of a good idea as I had thought it was before I got a reminder that driving in New York is not the most relaxing thing ever.

Family birthday brunch crowd
If reading this long sentence causes you to run out of breath, it was pretty tiring to do those things. All the activity caught up with me, and the drive back in traffic put a stressful end note onto the trip. Stopping in Fairfield to play briefly with Nell put a smile on my face, but still, I had car-itis by the time I pulled into South Hadley around 7:30 p.m.

Between Monday and Tuesday, I cried three times.

Tuesday was my re-birthday, and I was crying! The thought of this made me cry more. Of course I am grateful to be alive and grateful to Denise, my donor, for making it possible, but everyone with a cancer anniversary (cancerversary) knows that it can bring it all back, the good and the bad. Some personal anxieties were an added ingredient to the watery mix.

Central Park reservoir track
I exacerbated it by driving my new car at night to meet Joe for re-birthday dinner in Wallingford, Conn., about half way between us. I rolled down the windows and turned on the radio. Then I realized I couldn't figure out how to get the windows back up or turn the radio off. The mature response kicked in: I cried.

I pulled off and called Joe, saying I never should have driven the car in the dark. Once under a light, I saw how to get the windows back up but had no luck with turning off or changing the  radio station. (Which unfortunately was on a station broadcasting the State of the Union address.) Still, I got back on the road.

By accident, instead of getting on 91 South, I got on 291. My directions kept saying to proceed. I might eventually have gotten me back on track, but it felt wrong. So I pulled over again, this time in Ludlow, and called Joe again. Crying. Poor Joe. He said he had left early and suggested we meet in Enfield, much closer to where I was.

Arriving safely, I was relieved to see him coming towards me in the parking lot of the Yarde Tavern. The choice of 50 beers on tap and some 20 in bottles was a distraction from my (First World Problem) woes. I had a good bacon cheeseburger, a flight of IPAs (have already forgotten my favorite), and a great time talking to my middle child. He wished me happy birthday and said he was glad I was here. I thanked him for picking me up, literally and figuratively. I said I was honestly going to cancel our gathering. He said he knew, but he wouldn't have missed it.

He went out with me and showed me how to turn the radio off.  (A small switch that I couldn't see.) Everything was in a different place; if you've ever gotten into a rental, you probably know the feeling. He had to leave early in the morning for the Super Bowl, where he'll be working, but he said, "Call me if you get scared."

Joe to the rescue, again.

Did I say I'm grateful to watch my wonderful kids grow up?

Did I say that I'm grateful for New York trips and Broadway shows and jogging at the reservoir, and for parking places and places to stay and for family and friends and the whole crew that got me here?

Did I say I'm grateful for tennis, which today lifted me out of whatever funk I had fallen into?

I'm sure I said all that and of course that I was grateful for the grandchildren I didn't expect to see, but it can't hurt to say these things all over again.