Friday, February 5, 2016

A day at the (Washington, D.C.) airport

I met a lot of interesting people yesterday:

These included:

An electricity consultant,
A biologist who works on scientific learning models for elementary schools,
A man, with his wife, who was trying to visit his 93-year-old mother,
A businessman who had just lost $4,000 in billing hours, and
A woman who was mad as hell.

We were stuck for almost seven hours in Dulles Airport in Washington, D.C., where United Airlines flight 3783 was scheduled to take us to Pittsburgh at 12:22 p.m.

I heard upon arriving at the gate at 11 a.m. that the flight was delayed due to mechanical problems on the plane coming from Norfolk. The plane had taken off but turned around. The estimated arrival time kept being pushed back by the hour. About 3:30, the flight was canceled.

We streamed over to customer relations. The next flight out, at 5:30 p.m., was full. We could get on the one after that, at 10:10 p.m., which sounded like a very bad idea, or get the shuttle to the other airport (Reagan) and get a 5:15 on American. Doris, the agent, was punching in the information that would get some of us onto that plane when our flight was reinstated after another plane came from somewhere to get us out of there.

We rushed back to the gate. Now, the plane needed a crew. A nice looking pilot stopped to talk to someone. One of my new friends said maybe he could take us. We talked about how much worse it was for the people who were stranded in airports overnight around Christmas. Still, that didn't make our own little purgatory any less annoying.

You might wonder what I was doing in that airport. I used to be able to take US Air directly from Bradley to Pittsburgh to visit my friend Emily, but after US Air merged with American and Pittsburgh lost its hub, you can't do that anymore. So I flew out of Bradley at 10:15, expecting to make the connection and get to Pittsburgh at 1:50 p.m. Washington seems out of the way, but actually, it is only a 45 minute flight.

There is a certain camaraderie in these situations – up to a point. I did a little chair yoga and some stretching, read my book and the newspaper, and talked to my new friends as we circled around the boarding area. One woman spread out her sweatshirt and fell asleep on the floor. Someone said they should give us a voucher for lunch, but this was not forthcoming.

Luckily I had decided in the morning that rather than spending $20 on bad airport food, I would make a sandwich and bring some snacks. That easy banana bread recipe that I have been making has been great; I make it with a little less sugar, throw it in the freezer, and it's ready to grab and go.

At 5:15, applause rang out when the  announcement came that the plane was ready and had a fresh crew. Meanwhile, passengers for that 5:30 plane were arriving. More chaos ensued when we tired people from the earlier flight and the relaxed newcomers for the 5:30 were told to line up together and walk out the same door to the two planes awaiting us. Someone said, Make sure you get on the right plane! They didn't make it easy.

I walked down the passageway and went to the first door, marked flight 3783. A Delta rep shooed me and the others down to the next door.

Once on the plane, we got a laugh out of that.

They even had the signs were reversed.

The pilot apologized for the "wee delay."

I am always happy to see Emily, my friend since the 7th grade, but I was especially happy yesterday.

Saturday, January 30, 2016

All of this really happened

When talking to Dana-Farber's assistant VP for Gift Planning Alice Zaff at the recent Chefs for Jimmy, I told her I would send her the link to what Dr. Alyea and Melissa wrote about me in the fall 2014 e-newsletter, Advances in Hematologic Malignancies.

I directed her to the second link down, Complex Case Study: Four Stem Cell Transplants for Acute Myeloid Leukemia (AML).

There, she would see my story, starting with my diagnosis in 2003 at age 48 after unusual fatigue during the Saint Patrick's Road Race.

I won't repeat the whole megillah; you can read it if you want by clicking on the second link. When I reread it, certain things jump out at me: the nearly four years in remission after my first transplant; the relapse in 2007 (not included in their telling was the fact that Korby and I had just won at the Districts); transplant #2 with an unrelated donor (allogenic transplant) ; and six months later, pancytopenia (empty bone marrow), followed by transplant #3.

Picking up from there, they wrote: "Six months after her second allogeneic transplant, the patient's peripheral blood counts again declined. A repeat bone marrow biopsy demonstrated second relapse of AML. She was readmitted to Brigham and Women's Hospital with fever and neutropenia in December 2008, and did not re-emerge for four months. She underwent another induction chemotherapy with a high-dose cytarabine-based regimen and had multiple life-threatening infections, including pulmonary aspergillosis and cytomegalovirus (CMV) colitis with a related gastrointestinal bleed. Other complications included delirium and severe edema."

They didn't even get around to talking about the kidney failure and the coma.

It was during that stay that I received my fourth transplant, on Jan. 31, 2009, with a different unrelated donor (Denise).

Today when I looked at a bottle containing 300 vitamins at Costco, I said to my friend, "I don't know if I'll live that long."  That kind of "joke" still comes out of me reflexively. After I hit the five-year mark, I was no more likely to die of leukemia than anyone in the general population, but once you are afraid for your life in the way that I was, it doesn't totally leave you.

God willing and the creeks don't rise, tomorrow I will go to Fairfield to celebrate my seventh birthday, or re-birthday, thanks to Denise and Dana-Farber.

Friday, January 29, 2016

A moment of panic, then, just more of the same

What would you think if you looked up the results of a biopsy of a spot on your face and you saw the word "invasion"? Even if it said "superficial blunt-type invasion," wouldn't you be worried? Especially if you had a friend who died after a squamous cell cancer on her tongue spread to the rest of her body?

I was definitely worried when I went to PatientGateway to see why I got an email saying I had a message and then looked up the results from my two biopsies of a couple of weeks ago. Dr. Lin said she would call me with the results; when I didn't hear I figured no news was good news, but then a friend said I should really call, so I was about to but then I saw the test results. It was the first time in all these years that I slipped through the cracks.

Here is what I read:


Part of an actinic keratosis, focally at least bordering on squamous cell
carcinoma in situ.

Part of a SQUAMOUS CELL CARCINOMA, at least in situ.
It is difficult to exclude very superficial blunt-type invasion.

It was early in the morning. Luckily I had the doctor's home address, so I emailed her at home and at work to see what this meant. The words "very superficial" sounded OK, but not coupled with "invasion."

She responded right away, saying she was so sorry she hadn't called and that although those words that I mentioned sounded scary, it isn't that bad but it will need Mohs.

"The nose is ok. Blunt-type invasion sounds like a scary word, but blunt-type is the least worrisome type of invasion. All in all, it’s a pretty low risk lesion, but to be safe, I will be sending you to Mohs."

Mohs is the surgical removal of skin cancers. I have had it before in many places. This one will be on my cheek. The bright side: It is not the one on the top of my nose. It is a better place than two of my others: One on the top of my lip and the other practically on top of my tear duct, which left a hole necessitating a visit to a plastic surgeon who took a piece from my eyelid to cover the hole. She said I was getting an eye lift. I asked if she could even me out by doing the other side (joke) and she said no. I had one on my neck and one on my wrist, also.

I need to make an appointment for a consult with a Mohs surgeon in Boston. 

Another fun thing: In a couple of months I am going to return for another session of the face fry that burns off the top layer of skin and with it the spots that can turn into cancer or that might be early cancer. I have some on my neck, also, so PDT, or photodynamic therapy, will extend onto my neck. This treatment uses photosynthesizing agents along with light to kill cancer cells. It burns worse than a terrible sunburn. Holding a little fan in your hand and waving it around helps, somewhat.

So the year that came off my life when I saw the word "invasive" will be returned to me when I get my new skin.

Tuesday, January 26, 2016

Countdown to my seventh birthday

Five days to my seventh birthday.

The other night I dreamt I was climbing up a steep set of stairs. I was wearing a pair of old flip-flops that were falling apart. The left one especially was in bad shape, and it kept catching on the stair. Also I was having trouble lifting that leg up to climb to the next step. I wasn't sure I would make it.

But then, all of a sudden I was on the top landing. I realized I just had to put on sneakers and I would be fine.

Dream analysis 101: It is hard getting to be where I need to be, and I am worried that something will trip me up, but I realize that I can do it...especially if I have the right kind of sneakers, which is a big theme for me because I'm always trying to find the right kind to keep my toe from hurting and my plantar fasciitis from flaring up.

So maybe all I need to do to make it to Sunday is to wear the right shoes.

But first, I have to get through tomorrow.

I told the supervisor at that horrible Westfield Transport to never ask for me again after the fiasco of two weeks ago. He said OK, but when I got the automated call stating the service that is picking me up tomorrow, it is the same company. Nothing I can do about it now.

I have a double header tomorrow. Dr. Goguen in head and neck oncology at Dana-Farber at 1:30, followed by ECP at 3.

Since Dr. Goguen is only checking my tongue every year now, I asked Dr. Alyea if he and Melissa could just do it. He said no, because she can see things they can't see. So I made the appointment. Then she canceled and rescheduled. And canceled again. I told her nurse that my doctor really thought I should see her, but she said Dr. Goguen had too many things going on to schedule routine appointments. It was a little dissonant to be told by my doctor that I needed to see her and then be told by her office that she couldn't fit me in. I can't remember exactly when the original appointment was, but I think around six months ago.

This was the surgery in which she removed precancerous cells from the left side of my tongue. I'm not really worried because Melissa, Dr. Alyea and my dentist said it looks fine, but still, I would like to hear it from her.

I'm going to have to stop using my left arm at ECP. I like to have my right hand free if I'm using the computer or trying to read a book, but, judging from the trouble I have had with the vein in the left arm the last two sessions, it must have developed scar tissue. It wasn't so bad after my nurse the last time gave me five milligrams of Ativan and five of oxycodone, but I would rather not have the pain in the first place.

Saturday, January 23, 2016

(Sort of) back in the swing of things and trying something new

On Wednesday after I went back to the round robin in Enfield for the first time in a couple of weeks, I did something new.

I slept through the haircut that I got later in the day. Part of my fatigue came from returning to activity after pneumonia and part was from skipping my morning coffee because my stomach was upset.

You can definitely lose a lot after just a couple of weeks out. Or maybe it was three. I don't remember exactly. Especially at a "certain age."

A few days earlier I had gone back to yoga. I took it easy, telling the instructor that I might go into child's pose. Even so for a few days after, my arms hurt.

I usually like to do some kind of exercise every day, but I didn't want to push it. On one bitter cold day I thought of going to an exercise class at the Y but thought better of it. Maddie was glad.

On Thursday I finally gave in and tried Pickleball at the club. I had kept saying I didn't want to do it because I couldn't see the exercise in hitting a wiffle ball on a small court. Then I realized I couldn't say I didn't like it if I hadn't tried it.

Extra racquets were available for us newbies, and after trying it for a while, I could see that if you learned the rules and figured out how to hit the ball (especially the serve), it would be fun. You have to learn to stay out of "the kitchen," the area next to the net, except for a short amount of time, kind of like the zone in basketball.

Almost 30 of us were there, with play on four courts and people waiting to come in. I learned  how Pickleball came to be and read afterwards that it got its name from the family dog, like so:

"The sport was named after the the family cocker spaniel, Pickles, who was a canine of one of the co-inventors of Pickleball. Pickles chased stray balls and then hid in the bushes, so they named the game after him."

A sport named after a dog is a good sport.

A few of us watched some of the advanced players, who were really making the ball fly back and forth. I didn't realize how popular it has become. Some people play every day at various locations. I wouldn't want to do that, but I signed up for this coming Thursday.

I thought I was doing more listening than exercising, but still, as soon as I got home and pulled into the driveway, I fell asleep in the car.

Being sick for that relatively short amount of time definitely took its toll.

Monday, January 18, 2016

Off, off, damn spots

I have been telling people that I had a nose job as a way of explaining the bandaid across the bridge of my nose. It is near the spot where you usually got a pimple right before a date in high school. It is making me cross-eyed.

It is covering a spot I had biopsied at my visit to the dermatologist on Thursday. She also biopsied one on my cheek as a possible squamous cell cancer. I have had these before. It is par for the course. (Now that I write that, I am wondering what it really means, but it sounds fitting.) I hope I don't need a Mohs surgery on my nose. I'll find out this week.

A young resident actually did the biopsies while Dr. Lin supervised. I forget her name. Something with an R, so let's say Roberta. She called me ma'am. I said to please call me Ronni. She said, "You can call me Roberta." I'm not sure why this annoyed me, but maybe it's because she looked like she was about 10 years old.

She came in first to examine me and look at all the raised spots on my hands and also at some on my wrists and neck. I told her I was applying a cream called Carac once a day. I have so many creams, I forget what I am supposed to do with which one. When Dr. Lin came in and "Roberta" gave her summary, she said I told her I had applied the cream once. Jennifer – Dr. Lin – said that wasn't going to be very helpful. "I told her once A DAY," I said. Like I said, annoying.

Jennifer said I could hold her hand while the resident did the biopsies. I said I wished she could transplant her smooth hands onto me. Afterwards, she froze some of the spots. When they heal, I am going to apply a stronger chemotherapy ointment called Efudex to my hands and my wrists. It is going to turn them bright red but hopefully will help clean them up. This is important because the spots can be precancerous.

For the same reason, she scheduled me for another photodynamic therapy, or PDT, for my face. That is the procedure that basically fries the top layer of skin, which later peels as though you have had the worst sunburn. I said I wished she could do it on my hands. She said they could, but the ointment will work better.

Even though I am on a small amount of prednisone – 1 milligram a day – it seems to be the culprit. Melissa said my liver enzymes looked stable so when I go back to see Dr. Alyea in two months I will bring up the subject of stopping the prednisone. Again. Bringing it up doesn't mean getting off it. But we will see.

With all the serious side effects and other problems that people have, I feel silly stressing about my hands. Maybe it is because they are right in my view and it is hard to not look at them. They are the only sign that something has happened to me. The sun exposure from playing tennis doesn't help. I lather on sunscreen and even bought sun protection gloves but I probably didn't wear them enough.

Sometimes when I'm stressed (I'm sorry, this is gross), I don't even realize that I am picking at them. When Katie catches me doing it, she says, "MOM!" I have been told that people are not staring at my hands or even giving them a thought. I'm sure that is true. Trying to let it go. Maybe I'll start a new trend of going back in time and wearing ladylike white gloves...with my tennis skirt and sweatshirt.

Saturday, January 16, 2016

Was it a good dream or a bad dream?

In my dream, my mother died before my father. That wasn't the way it's supposed to be.

I was worried that he would be unable to take care of himself. I went to the apartment to talk to him. He was so unsteady, I worried he wouldn't even be able to make it to the store. I suggested he get rid of the apartment so he could come out here and hang out with the other elderly men at the JCC. I told him I had seen them congregate in the lobby, where they seemed to be engaged in lively conversation. He said he wasn't ready.

Meanwhile, my mother came back to tell me it would be OK. I asked her what she did when her own mother died. She said she let herself feel her feelings. Some days she was sad, but on others she was fine. I love it when she is sitting right by me. I like to believe she is really there.

On another topic, I dreamt I had to leave work (at the newspaper) for what I thought would be a quick visit to a doctor. A previous examination had suggested the possibility of breast cancer. (I had read a story about someone undergoing treatment, and my porous cancer-sensitive mind absorbed it and must have stored the fear that it could be me.) After two hours, I still had not been seen. I tried to text Mimi back at work to say what had happened, but my phone wasn't working properly. I never did get in to see that doctor.

But then I realized it didn't matter how long I was gone because the paper was closing in one week anyway, and nobody cared what we did. Still, I wanted to finish up a couple of stories. I went back and found some newspaper peeps and said how much I was going to miss them. I suggested we make a group email and send it out so we could try to get together in a year. Somebody said that wouldn't work, and I realized it was a far-fetched idea.

People were wondering what they would do next. Realizing the end of the paper was near, I had sent out some queries and had been offered a news writing job at the Hartford Courant. I told somebody that I was afraid I would end up covering meetings while all I knew about was writing features. The person said not to worry.

Cancer relapse/technology trouble/parental dying/newspaper nightmare all in one night.

But on the positive side, my mother came back to tell me it was OK, and I had a job.