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,
GVHD, PDT, ECP.

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.