Tuesday, April 28, 2015

T cells get behavior modification

"We have to get them to stop acting like teenagers."

The "them" is my T cells,  and my nurse today at the Kraft Blood Donor Center at Dana-Farber told me this in explaining why it will be my home away from home for two days out of each week for the next three months or longer.

My first visits yesterday and today went well. The only discomfort occurred when the needle didn't quite hit the spot (not fun) and when my arm hurt for the last 10 minutes or so when my white cells were returned to me after being collected during the three-hour process called ECP, or extracorporeal photopheresis.

My blood went through six cycles during which white blood cells (which contain T cells) were collected and then the rest of my blood returned to me. At the end, a bag of white cells is subjected to UV radiation, which changes their DNA so they will stop attacking my skin.

"They're getting a spanking," the nurse said.

The process works for all kinds of Graft vs. Host Disease, and hopefully it will also help my liver and enable me to get off prednisone. Two other people were getting it done at the same time, and several more were scheduled for the next round at 11, and more for 3, which is when I did it yesterday, followed by the 7 a.m. session today. It felt early but it was actually a good time because I slept through most of it.

Clearly I'm not the only one who drives a distance. One couple, for example, comes from New Jersey.

And I'm not alone in getting GVHD of the skin years after my transplant. The nurse said one woman developed it after 12 years.

I had brought my computer and was able to read a little of the New York Times. I have a book but I'm not sure how that will go because I can only use one hand. I'll try it next time leaning the book on a pillow. The nurse said most people use a tablet. I'm still a hold-out on that, though.

Afterwards, I made a beeline to the cafeteria, where they have Starbucks coffee. It's not a great idea to drink too much beforehand, because if you go to the bathroom they have to put a board on your arm to keep it straight.

I texted the photo of me in the bed to Ben, Joe and Katie.

Joe wrote, "Looks comfortable!" and Katie wrote,

"Back at hotel Boston!"

Sunday, April 26, 2015

New York today, Boston tomorrow

Back from New York, I'm unpacking and repacking for my trip tomorrow to start the ECP, thinking it's strange to be sitting on a bench looking at the boats on the Hudson earlier today and now be back at home confronting the mess I left behind after getting up at the crack of dawn yesterday to go spinning and then realizing that it was time to go meet Ben for lunch before catching the train.

Running around saying to Joe, "I can't find my green watch! How can I leave without my green watch?" and Joe saying, "Just go, Mom."

This is a fact of life: The mess you leave is the mess you'll find when you come home, for most everyday people, that is, who do not have someone to clean up for them.

I am wired and tired simultaneously.

I successfully got all my visiting done, with only one traveling glitch, which was that after dinner with Bruce, Jeanne and Amanda at one of our go-to restaurants, Mezzaluna, on the upper east side, I took a subway down the east side, expecting to connect to go west, but that train was down, and when I went up to the street (around 11:30) I couldn't find a taxi or see a bus. I have the Uber app but when I saw that it was nearly double the normal fare, I walked the long crosstown blocks all the way to 8th Avenue (five of them), and then up two, and by the time I got to Serena's, where I was sleeping, I was limping.

Moral of the story: Spend the money rather hurt the foot that already has problems.
Today I was smarter and took a cab to Grand Central.

It was good of Serena to get up and have breakfast with me at an hour when most New Yorkers are still asleep. It was us and a few members of the stroller set at the normally busy Grey Dog. After that I was not ready to leave New York, so I walked over to the Hudson to sit on a bench.

Another fact of life: The later you leave where you are, the later you get home.

Jane and Jim didn't even think I was going to get Maddie since she is returning for another overnight tomorrow, but I needed to borrow her for company tonight before the next trip, which will be not as much fun but probably not too bad either.

Saturday, April 25, 2015

Skin problems and skipping down to New York

These are all of my ointments and creams.

Sometimes it is hard to remember which is for what, when to apply and why.
It can take 10 minutes just to get ready for bed. At least the tubes are colorful.

I never knew that being being treated for leukemia could lead to so many skin problems.

Squamous cells in situ,
Mohs, keratoacanthoma,

A dermatological poem for National Poetry Month.

I'm going to New York today just for an overnight to see Aunt Marge and cousins. I'll need a separate bag just for that. My MetroCard bag might be appropriate.

First I will stop in Fairfield for lunch with Ben and Meghan, and then I will hop on the Metro North train to Grand Central.

 Someone recently suggested taking Amtrak, which I have done, but arriving at Penn Station is a downer. Beautiful Grand Central with the sky in the ceiling sets a much better mood.

Penn Station makes more sense when going down the west side as I will be today for going to Serena's, but have MetroCard, will travel, and it's easy to catch a subway (as long as I stake out my space on the side holding the rail). Sometimes I drive on through because I can usually park in Chelsea, but I'd rather take a snooze on the train. These are important considerations.

I'm sorry that I won't be able to run in the park. The tennis clinic on Thursday didn't make my foot hurt at all, but I know that running will aggravate it. I'm sure I will walk around because that's what you do in New York, and it will be nice although not quite the same as a run.

Also Ken Holt had said that he doesn't like my current running shoes, so I am waiting for a new pair that I ordered from Zappos. Want to hear something funny? If you call Zappos at 800-927-7671, you can press 5 to hear the joke of the day, followed by laughter.

I am up super early even though I stay up late (is that why I get sleepy in the car?), because the minute I stir at the sound of the birds, Maddie puts her face on my bed right up to my face and then it is over. After that I don't feel like going back to bed.

I went spinning at the Holyoke Y at 7:05 a.m. so that I could get my exercise in before I go. The blaring music is not the kind I usually like, but it pumps you up and clears your head. Your mind can't wander too much when you are going up and down, up and down. I couldn't keep up with all the "jumps"at first, but now I am used to it and it is a lot of fun. I will probably be tired later, but with a strong cup of coffee I should be good to go.

Friday, April 24, 2015

Help wanted

My ECP procedure at Dana-Farber starts on Monday, and I am trying to figure out a way to get some help with driving without putting anyone out too much.

I don't like to ask, and I have a feeling that a former good friend dropped out of sight because I asked too much.

But if I do all the driving myself, I am afraid that I might drive myself into the ground, not literally, I hope, but just in terms of fatigue, especially driving back after the Tuesday procedure.

So, it goes like this: I leave Western Mass around 12:30 p.m. Mondays (after hopefully getting in the 9 to 10:30 a.m. tennis clinic). Then I return on Tuesday after the procedure is done. It starts at 7 a.m. and lasts for about three hours.

I am wondering if perhaps someone could drive me one way and somebody else pick me up. This would only work if I stayed at Diane and David's as opposed to Margaret's because I could go back and forth on the T.

I would provide gas, EZ Pass, coffee and scintillating conversation.

On Monday I'm going to do it by myself because I'm staying at Margaret's.

It shouldn't be too hard to pass the three hours. I can get some reading done: books from the pile next to my bed, the New York Times and the New Yorker...actually whole issues at a time. Also they have wi-fi so I can catch up on various TV series or watch a movie or even do some work. I have already talked to my friend, Dana-Farber photographer Sam Ogden, about stopping in to say hi, and also I hope that another Dana-Farber friend, Saul Wisnia, will drop by. It could turn into a regular social occasion.

Wednesday, April 22, 2015

One day, multiple parking spots

As a native New Yorker who cares deeply about the art and science of parking, the promise and pitfalls, the successes (good for tomorrow!) and failures (putting the car in a garage or getting a ticket), I found that yesterday, as seen through the lens of a concerned parker, was strange.

To back up (although not into another car), I had spent the night at Diane and David's after driving on Monday in the pouring rain to have the troublesome area on my lip checked out by yet another dermatologist at Brigham Dermatology Associates, which seems to have become my home away from home. Dr. Anthony said it is probably just viral due to cutting back on the Valtrex, but she did a culture to rule out the presence of squamous cells. I asked her to give a good freeze (cryotherapy) to the bothersome spots on my hands, and she zapped vigorously, requiring a bandaid on two unsightly areas.

I left early enough yesterday to go straight to Northampton to catch part of class at the Literacy Project. When I got to the Gotham Street parking lot, usually full, causing distress and the hunt for parking on the street, I was pleased to see many good spots. I put enough quarters in the machine to last until the end of class at 12:30. But it turns out that I wasn't needed. Many students had either left early or just not come. There were two tutors for five students and there was nothing for me to do.

But I had paid for the spot so I sat in the car and conducted some business, calling Hampshire Orthopedics and Sports Medicine, where Joe had gone due to problems related to being a catcher. I am frustrated with this foot. Every time it feels better and I exert myself it starts to hurt again. That will be next Thursday.

It didn't seem right to be in Northampton and just go home, so I went downtown. I pulled into a parking space a little distance from downtown and took out my quarters for the meter. It wanted a lot of quarters for a short time, so I pulled out and walked to the garage. I walked to the Haymarket to have a blueberry scone and a coffee and then read the paper.

During my wanderings I got a call from Diane at the Kraft Blood Donor Center at Dana-Farber. She said the Draculean procedure, aka ECP, will start Monday at 3 p.m., followed the next day at 7 a.m., and so on and so forth for about three months.

At this count I have about half a dozen stories to research and write for my new gig, working for my old employer, the Republican, and my editor/friend Mimi Rigali. They are for a book on Italian-Americans of Western Massachusetts, part of the Our Stories series. They are not due until July, but still, I have started to make some calls and had better proceed.

But first, after all that driving, I needed some exercise. I went to the Holyoke Y (excellent parking in the usually crowded lot) for spinning but got there late because I was rummaging for my biking shoes, which I figured would give me the best support. It was not quite enough so I did an abbreviated swim.

Today, after Pilates, a short ride on a bike at the Hampshire Y, and then, work.

Monday, April 20, 2015

Things to do and things to remember

Things to do, things to remember:

1: Go to foot store and get a new foot, or make an appointment with an orthopedist because a podiatrist has not figured out why every time my foot gets better and I play harder it hurts again.

2. Jump in car for 3 p.m. appointment with Boston dermatologist who will look at my lip and possibly biopsy.

3. Watch the middle, remember that winning a game after six or so deuces is pretty good, remember it's only a game.

4. Don't eat a brownie after tennis match, then take one home for Joe but eat it myself after going out for pizza and a beer and then sitting down at table to write Surviving Cancer post and eat the brownie while I am doing it and fall asleep at the table.

5. Write that post earlier in the week because I know that it is due on Monday and wonder each week why I leave it for the last minute.

6. Be thankful for all my tennis friends made through teams such as Ruthless Raquettes, Mass Confusion, Specially Seasoned, Full Court Press,  Paper Dolls, Orange something or other and newly discovered Tennis Buddies who are so much fun.

7. Go out with them after the next match even if I don't play because I had so much fun going with them to Joe's in Northampton last night and they are all so nice and friendly.

8. As soon as I finish this, write that post on clinical trials for cancer and why more adults don't take advantage of them.

9. Be thankful that I have different places to stay in Boston if I need to spend the night and that Maddie has a second home with Jim and Jane Bloom who love her so much that they don't want her to leave and that she loves them so much that when I say "Do you want to go see Jim Bloom?" her ears perk up and she wags her tail and looks around and that when I open the car door at their house she runs to the front door after which he lets her in and she does the traditional grabbing of his shoe and he hollers, "Put that shoe down" but it is only in fun and I know that later she will get in bed with him and put her head on his shoulder when he takes a nap.

10. Breathe.

Saturday, April 18, 2015

Take away one (pill), add three

The problem that I am about to describe falls under two categories:

1: Be careful what you wish for, and
2: There's always something.

In a continuing effort to decrease the number of pills I take, I have been focused on two that I take prophylactically due to decreased immune function resulting from prednisone. They are Valtrex (valacyclovir), an anti-viral, and Bactrim (sulfamethoxazole), an antibiotic.

Since I am down to taking 1 mg. of prednisone, Melissa said I could cut down the Valtrex from 2 grams daily to half that, in other words, one horse pill a day. That seemed fine for a couple of weeks.

Then an old problem reasserted itself. It was a tiny bit of flaking on my left upper lip and a burning sensation throughout. I emailed my dermatologist, Dr. Lin, about it because that is the way we have communicated in the past. I didn't hear back so I called Melissa. By then the problem area on my lip had gotten bigger and more painful. I sent her a photo, and she said she would talk to Dr. Alyea and Dr. Lin. This was yesterday and by this morning I had not heard back from anyone.

I woke up on this bright sunny day and was surprised that tears were running down my face. I tried some Tylenol but it didn't work. I thought of taking something strong and calling it a day, but I knew that if I went out and did something I wouldn't be so focused on my lip.

I went to yoga and then to the library and looked out the window at the beautiful view and the benches alongside the river and thought that on the next nice day, I will bring a coffee, a book and maybe a friend and sit there. In the back of my mind I remembered that I was supposed to get a new library card, and when I went up to the desk I learned it was the last day to get one free.

Back home, I was getting ready to go meet a long-lost friend when emails came making everything clear. Melissa had thought Dr. Lin was going to get in touch with me, and Dr. Lin thought someone from her office was going to call.

End result: a steroid ointment, doubling up on the Bactrim and taking two more Valtrex. The ointment made it immediately feel better, but I still might need to go to Boston next week to have it looked at.

I made it on time to Northampton to meet that fiend. We went to Paul and Elizabeth's, where we used to take our babies in strollers. Through a misunderstanding, we had not talked in 30 years. We had seen each other on Linkedin and started messaging.

It was a good time to talk, in between the lunch crowd and the dinner crowd when the restaurant was quiet. We talked for almost three hours, one hour for every 10 years.

If I had stayed home all day, none of this would have happened.

Wednesday, April 15, 2015

Moving ahead

After my last appointment at Dana-Farber I wrote that I have to increase my prednisone to 10 milligrams from 1, then I wrote that I was questioning it, and now I have a resolution.

It's hard to question a decision when you are at a place like Dana-Farber but also important to remember that although geniuses, these doctors are human. Still, while waiting for Melissa to call me back after I sent an email stating my concerns, I was nervous. I'm not sure exactly about what. Probably about the whole upcoming process of the ECP and focusing on one particular concern i.e. the prednisone.

Melissa called Monday afternoon and said she and Dr. Alyea agreed it's not great to do two things at once because when hopefully the procedure works you wouldn't know which one improved the GVHD. And even with this low dose, there are side effects. For example I am looking at my left arm which has pools of blood forming under my thin skin, creating purple blotches which I haven't had for a while.

As my mother's daughter, I enjoy wearing rings, but I can't do it now because my hands are swollen. They were willing to avoid the ECP until my hands started showing the effects. The ring that I got in Spain is adjustable so I thought I could squeeze it on. The stone popped off and I put the two pieces in a bowl and looked at them until this morning when I decided to put them back together with the same sticky glue that I used to fix my glasses.

At first it was problematic because the purple gloves I was wearing got caught up in the glue and I had to pull the pieces off without gluing my skin like Joe did when he was a little boy.

I finally succeeded although a small piece is still stuck to the bottom, which is OK because you can't see it.

Fixing the ring might mean that I am ready to get fixed.

Two times a week, three hours each, three months, and an overnight in between.

There is no feasible alternative to going to Boston. New Haven and Bangor, Maine are the only other places in the near vicinity.

It is not in the same league as preparing for cancer treatment, but there is a similarity in that once you get over the hump and make your plans, you just go and do it.

Depending on how I feel after the first session, maybe it will be a chance to catch up with friends in the Boston area. Or at least buy a new hat.

Monday, April 13, 2015

Follow by email

Thanks to my friend Wendy Harpham, who provides good advice on many things from healthy survivorship to adding a a tab allowing blog readers to get email alerts about new posts.

I hadn't really thought of this until she pointed it out, but it makes sense because readers who are not on Facebook don't know when bloggers add a post.

After signing up for email alerts on her blog, I googled how to do it on blogspot, and sure enough, it came right up and was easy to install.

You'll see the Follow by Email tab at the top right corner of this blog.

Sunday, April 12, 2015


I always say yes to everything Dr. Alyea proposes because after all Dana-Farber did save my life and he is the genius doctor who led the effort.

So it is a big step for me to question his wanting me to go up to 10 mgs. of prednisone at the same time as doing the ECP. He had said he did not want to increase my dose from 1 mg. because I have been on it for so long, which is why I am going to start the procedure. Being a certain kind of person who mulls things over and then mulls them over again instead of saying to myself, "I'll ask Melissa on Monday" and then putting it to rest, I have been losing sleep over this.

Melissa sent in a prescription for the higher dose but I did not pick it up.

Just now I wrote:

I have been thinking about Dr. Alyea wanting me to go up on the prednisone and am confused because he said he wanted me to do the ECP to avoid upping the dose. We have been working hard to get down to 1 mg., so I am upset about going all the way up to 10. Since the procedure has been shown to have good results it seemed like a good way to not up the dose. I wonder how we would know if the procedure was working if I went all the way up to 10 at the same time.

Now maybe since I have written it down, I can leave it alone for the day. It seems to actually finally be spring. A good day for a dog walk.

Friday, April 10, 2015

Something else to keep me busy

In the general scheme of all things cancer related, the following is not a big deal.

It is, however, an annoyance, a logistical challenge and a general mood buster.

It turns out that I will need the ECP for my graft vs. host of the skin. I saw my dermatologist, Dr. Lieu, today, and she said now is the time to take action because it has gone into my hands. The only other place besides Boston is New Haven, and that isn't any easier. So I will be in Boston at the Kraft Blood Donor Center for two consecutive days a week, three hours each session, for three months.

In the the process, blood is removed, white blood cells are separated, then exposed to ultraviolet radiation which in my own layperson's terminology gets them to behave, and then returned to the body.

I will need to alternate overnights at Margaret or Diane/David's. I can pick from three times, 7 or 11 a.m. or 3 p.m. Probably a 3 p.m one day and maybe even a 7 a.m. the next day so I could just roll out of bed, get hooked up, and doze through it.

I saw Melissa after Dr. Lieu and she said that although Dr. Alyea did not want to up my prednisone alone, most people doing this procedure take more than I do. So I have to go back up to 10 milligrams a day. Not happy about that but hopefully it will just be until this thing gets under control and then I can decrease again.

Good news: I will not need a port.

I went for a "vein check" today, and my veins look good.

I have good people who will put me up/put up with me.

The process generally yields good results.

Hopefully afterwards I will feel better in my own skin.

Tuesday, April 7, 2015

To hang up, or not to hang up, my running shoes

Dr. Alyea usually asks me, "How's your tennis game?" (A sign that nothing is wrong.)

Dr. Berger asks, "When are you going to run the (Saint Patrick's) race again?" (He always runs it.)

Yesterday when I saw my internist about a couple of things, he spoke about the race differently, not wondering when I would run it but instead saying I probably couldn't run any long distances again.

I told him that I had hurt my foot/toe, that it had greatly improved and that I was back (mostly) to tennis but that I hadn't run the race this year due to my toe, and that when I had run just a little over a mile this weekend it started to hurt again. Not a dull ache but spiky shooting pains to get my attention.

I put the boot back on around the house and it calmed down. I thought I could play tennis three times this week, but instead I went to a clinic yesterday and hope to add one more time instead of two. It felt OK after tennis.

I don't have a running community, but I do have a tennis community, and I'd hate to ruin it by re-injuring my toe when trying to run. The endorphins are not the same, but they are present in playing and practicing with a good group, combining serious learning and fun.

I wouldn't rule out EVER getting back into it. But I (and many of us) come to a point where our feet can't support the pounding. The constant movement hurts, compared to stopping and starting in tennis and less pounding in general.

I had identified as a runner, and it's hard to let it (and the endorphins) go. For a long time it was a panacea for everything. But it was a good habit that has turned into a detrimental one.

When I talked to Dr. Berger about the possibility of getting the ECP for my Graft vs. Host of the skin, he said he didn't know much about it but he could see that my skin was, well (not his word) funky.

He pinched my hand and my arm, and there was nothing to grab. He pinched his own to demonstrate that there should be some loose skin.

By the way it's not because I'm thin. He is a runner and super thin. He just was showing how normal skin is supposed to behave.

If I do give running up, I guess I can say what those of us formerly in the newspaper business say: "It was a good run."

Saturday, April 4, 2015

Something good, something still annoying

Good news: My podiatrist said I have excellent pulses!

Well that is something.

He commended me on getting back into tennis slowly so that I don't backtrack. I'd say my toe is 85 percent better, meaning it no longer hurts when I play tennis but still hurts a little afterwards. I did both clinics this week for the whole hour and a half and felt good. George said he liked my backhand.

Also went to half of the two-hour fitness marathon at the Y yesterday and did everything except jumping up and down. Jumping jacks do not seem to be in my repertoire. First of all I can't get my feet off the ground, and secondly they're probably not great for your feet anyway.

Meanwhile, Dr. Lieu, the dermatologist at Dana-Farber, called to say she had spoken with Dr. Alyea and Melissa and they do not want me to increase my prednisone dose. They are seriously considering the ECP for me. I am going to Boston Friday for an appointment with all three of them to discuss. Dr. Lieu will in the meantime look into alternatives closer to here than Boston.

It is three hours a session, twice a week for three months.

I would need to get a port.

I thought I was done with that kind of thing.

As I was telling someone this story yesterday, he said,

"At least you're here to talk about it."


But annoying anyway.

Wednesday, April 1, 2015


I had almost forgotten about the biopsy that I had on the tiny spot on my forehead, so when my dermatologist, Dr. Lieu,  called today to say it was another squamous cell I was a little surprised.

It's the usual – in situ – or on the skin, but still I need to apply a chemotherapy cream to it for a few weeks.

Our conversation about some swelling and stiffness in my left hand was more disconcerting. I have had trouble flattening out that hand for a while and thought I might be developing arthritis. I am going to bring this up with my internist when I see him Monday. But lately I have noticed swelling also. I brought this up with Dr. Lieu by way of wondering if this is related to the GVHD on other areas of my skin. She said yes it is more likely that and less likely arthritis and that I should probably come in before my next scheduled appointment.

I don't mind not doing the perfect down dog but I would rather that hand not curl up on me since I need it for writing.

I might have to increase my prednisone dose, which of course is not the way I want to go. Another possibility previously mentioned is ECP, or Extracorporeal photopheresis. I found this definition on the website of the National Institutes of Health: ECP is a cell-based immunomodulatory therapy that involves collecting leukocytes from peripheral blood. These cells are exposed to a photosensitizing agent, 8-methoxypsoralen, and are then treated with ultraviolet (uv) radiation, after which they are re-infused. 

This would require twice a week for a ridiculous amount of time. Plus Boston might be the only place it could be done. She will talk to Melissa and they will see if they can arrive at some alternatives.