Mysterious rash on face, marvelous trip to US Open

With Donna and Roger at the US Open

When I heard while watching Kaia Kanepi play at the US Open that she had battled plantar fasciitis in both feet – and almost quit tennis because of that and the debilitating Epstein-Barr virus – I could totally sympathize with the plantar fasciitis part. (She lost to Serena Williams in the Round of 16.)

My friends said I complained more about the heel pain than I ever did about leukemia. 

Actually I don't think I complained about cancer at all. That's because I expected it to be bad. The heel pain drove me crazy because I couldn't understand how an area the size of a quarter could be so debilitating. During one bout I skipped all exercise for about six months. Even walking to the end of the driveway, I felt like I was walking on crushed glass.

Now something new is driving me crazy. It's a combination of blisters and rash on and around my lips. Sometimes it hurts a lot, or stings, and other times it's incredibly itchy. I sent photos to my health care team. One doctor said it could be an allergy. Another said it could be, in his shorthand that took me a minute to figure out, HSV, or herpes simplex virus, otherwise known as cold sores, aka HSV1.

One possibility is that the herpes simplex virus broke out because they let me decrease the dosage on the Valtrex that I take as a preventative, because I'm on prednisone, from 1,000 mgs twice a day to 500. Dr. Marty said to in an email to increase the dose, so I did. 

I thought maybe the chemotherapy cream, Efudex, that I'm applying to select spots, had gotten onto my skin and irritated it. But through my googling I have learned that the cold sore can spread from your lip to other areas of your skin. So I figured it probably wasn't some stray Efudex. 

A friend at tennis said it looks like sun poisoning. She suggested Aquafor. It feels good to have something moist on it, but I don't know what it's doing. The pharmacist said to put aloe vera gel on. I said it would burn. He said not if it's pure. He sold me some. It burned. 

I came upon a story about shingles and decided that's what I have.

The pharmacist said stress brings the cold sores out and I should go home and rest.

What, me stressed?

I tried unsuccessfully to remember if a correlation existed between the outbreak and the outburst on the tennis court.

WHAT DIDN"T CAUSE ME STRESS was my fifth annual bus trip with Donna to the US Open Friday. It strikes me as funny that when I lived nearby, I never went. But as soon as I went on the bus from the Enfield Tennis Club, I was hooked. 

In my story about how tennis helped me recover from leukemia, I wrote about what the trip means to me.

Rafael Nadal, a speck

We've had fun every year, but the first year was more haphazard because we didn't know where to go. Now, we have a plan. It being USTA Membership Appreciation Day, we went to the USTA booth first to pick up our gift. It was a $10 gift card and a nice baseball cap with ... drum roll ... USTA member on it. 

Then we went to an outside court to watch doubles, sitting so close that you could see and hear how hard they hit it. This is the fun of going that I didn't understand when I lived so close but never went. 

The heat had broken. It was slightly cloudy, with a little rain here and there. Perfect weather for it.

When we were talking around, Donna said, excitedly, "I see Roger Federer!"

I jumped.

There he was, on a wall. A woman took a photo for us. 

We checked out the new Armstrong stadium and went to our nosebleed seats in Ashe – part of the bus trip package – to watch Nadal play the young Russian prospect, Karen Khachanov.  We went down further than our assigned seats, but due to the full stadium, they wouldn't let us sit in a lower section. We were close enough, though. Also, we got to see the new roof close.

I got a kick out of emailing my friend Francisco Marty, the infectious disease specialist at Dana-Farber, and getting a response in less than a minute. I told him about the rash and asked about increasing the Valtrex, and he wrote back, to increase, and also, "take a selfie with Nadal."

I wrote back that Nadal was too far.

He responded, "Tell him come up to you."

He always made me smile, even when I was deathly ill, and he had made me smile again.

Though we wanted to stay to the finish, we also wanted to see more action, so we left before the end. Out in the plaza, a crowd had gathered to watch the gripping finish on the big screen. We joined them. The world may be falling apart, but we shared this communal moment with strangers who cared only about a tennis match. (Nadal won in four sets.)

The bus left at 7:30, an hour later than previously. Our trek to the bus (it's a long walk) was much calmer than our first year when I wasn't feeling well. Our friend Deb Doner was leading the way, imploring Donna to get me to go faster, and to maybe even put me in a cart. Donna said she was doing the best she could but she couldn't pick me up! When we finally got to the bus, what happened next wasn't pretty.

US Open signature drink

That year it was scorching hot. I didn't drink enough water. I thought I only had one, but Donna says I had two of the signature Honey Deuce cocktails with Grey Goose vodka in a (plastic) glass with all the names of all the Open champions on it.

This year I only had one, and I wasn't sick, unless you count whatever is going on on my face. We got back to the bus early...and waited almost half an hour for two stragglers. It ended up being a long day. But I would do it again.

Meanwhile back at the ranch, I have been taking Tylenol, Advil, and occasionally a little oxycodone when the pain around my lips reaches a 9 on a scale of 1 to 10. Dr. Lin (Jennifer) said via email to apply 2.5 percent cortisone and Vaseline. She also said to stay out of the sun. I don't hit the Ativan much, but I took a little when I realized I wasn't breathing. (Well, I was breathing, of course, but not the right way.)

    

We went to a party. I tried, unsuccessfully, I'm afraid, to keep my hands off my face. The whatever-it-is was itching like crazy. At home, I took two Benadryl. The next morning I felt hung over.

I skipped George's clinic at the Canoe Club yesterday. Meghan's yin yoga at the Hampshire Y seemed like a better thing to do. It is the perfect combination of movement and stillness. Hearing her voice brings me back to Costa Rica. 

On the way home, I stopped at the Canoe Club. I sat under the umbrella and talked to George and the players who had just finished. I told him about the "I hate you" comment. He said he had overheard an exchange between my antagonist and another player. The other person had said, "That's uncalled for."

So this person is taking something out on others, and not just on me.

George said it's a long summer. It's not the first time that by the end of it, words can fly like tennis balls.

Today was the first day of an indoor contract at the Bay Road Tennis Club. It's split among six players. I thought of getting a sub, but I didn't want to do it on the first day, and I thought that it would feel good to run around. I figured while pain in my feet stopped me from playing, there was no reason that pain in my face should do it.

They are nice ladies and excellent players who don't take themselves too seriously. 

Will give a report in another post on the what is the reason for my rash, and what I'm going to do about it.

Writing up a storm, coping with neuropathy and other things

At fun party in Fairfield for Nell's second birthday

I've been remiss in posting on the blog but busy writing in other places and doing things such as going to Nell's second birthday party (fun) and going to Dana-Farber for ECP sans my friend who was driving me because the friend is on the disabled list (not too bad of a drive because I had one of the best drivers though not great about the friend on the DL).

I wrote this one for the Huffington Post about how John McCain's brain tumor diagnosis sparked memories of my father's. And another  about the difficulties in treating neuropathy. I did research and interviewed people who suffer from this intractable problem that has plagued me since my last round of chemotherapy eight years ago. (It must have been the strong rabbit serum, or ATG, that thankfully knocked the leukemia out of me.)

As the people I interviewed told me, it is a strange condition in which your extremities (in my case my feet) are numb and tingling and painful at the same time. I had proposed it to an editor I met at the American Association of Journalists and Authors conference in New York this spring. It was through Client Connections, a sort of speed dating event with editors, in which you have nine minutes to present yourself and your ideas.

Callen snoozing

You don't always get a story, so I was glad I got this one. It was my first time and I admit to being flummoxed. I haven't heard from the two other editors and should probably follow up by sending them the neuropathy clip, which is not a clip in the old sense of course but I still like to use it. Marketing is a good part of this freelance life and not one that an "old" newspaper person like me enjoys, but I have to do it because there are a lot of us out there.

My story ran as the August feature on the website of the MedShadow Foundation, whose goal is to educate on the side effects of prescription medicines and the potential alternatives. Of course as I was writing it, my feet felt worse, and I imagined myself eventually incapacitated as were some of the people I interviewed.

Which is similar to when you're a reporter and you write about people suffering from different diseases and imagine yourself getting that same disease. (You might have tried to avoid the story by making yourself "invisible" by sliding down in your chair when the editor came by with the assignment that you knew was coming but somebody had to do it, and the editors knew the tricks.)

And then you Snapped Out of It, thinking of good things that were happening at the time or just bringing yourself back to earth by reminding yourself that you were writing about other people and not about yourself.

Part of dealing with neuropathy has to do with distracting yourself rather than focusing on it. So other things I have been thinking of include cute talkative Nell and cuddly newborn Callen (who I cradled in my arms at the birthday party); happy Ben and Meghan and Joe and Katie all doing such good jobs; the guy whose name I can't mention (due to confidentiality) who I'm now taking care of as so many people used to take care of me; coach George sharing his tennis wisdom which I keep saying I'm going to write down, (and saying to me at a clinic yesterday when I was tired and trudging to pick up balls, "On your toes, on your toes"); and tennis friends joking yesterday that the title of my autobiography could be what I said when we were doing volleys and I made the right shot with the wrong foot in front.

"I had the wrong foot, but I made it."

Watch Federer always using the correct foot!

Playing tennis with CMV on my mind

Yesterday I checked in with Melissa to see if the test for CMV was back, in hopes that it would be gone and I could start tapering the Valcyte, the probable culprit in lowering my counts last week.

The CMV was the same. She said I should come in this week to have my counts tested instead of going onto the two-week plan. So, I go on Thursday.

My mind went in a bad direction. I looked up CMV again (I’m not sure why, because I already had looked it up) and saw that it can cause disease and even death in immune suppressed people. Post-transplant patients and people with AIDS represent the highest risk. CMV can also lead to eye infections, which, if they get out of hand, can lead to blindness. I hope nobody with CMV reads this and gets freaked out, because I assume that most cases, when caught early like mine, lead to nothing but a little diarrhea and inconvenience.

This is where the Internet does not come in handy. If you look up pneumonia, you will learn that it might kill you...but in most cases it probably won't. Look up anything and trace it to its worst-case-scenario, and depending on your mood and vulnerability at that moment, you will either dismiss it or get paranoid.

After I talked to Melissa, darkness fell and the night goblins came out. I almost called my good friend Vytas, who had been one of my nurses at Brigham and Women’s Hospital, and who has fielded many of my questions over the years. I wanted to ask, “Do you think I’ll go blind?” I felt like I would sound crazy, so instead, I finished the conversation in my mind. “Helllooooooo,” said Vytas-in-my-mind. “No, you are not going to go blind.”

Instead, I treated myself to countless Oreos and half an Ativan.

In the light of day, everything seemed better. I had my Tuesday morning tennis lesson with George, who is an incredibly talented teacher and a hoot.

After initially resisting the forehand loop last week, I had looked it up on the Internet, watched a video, read the instructions and became convinced. I did it almost every time. George beamed. “You’ve reprogrammed yourself,” he said. “I’ve put another looper out there.”

Would that we could reprogram some thought patterns so easily.

We then worked on my backhand volley.
“Hold your left hand on your racquet until the last minute,” he said. “If you let it go too soon, it’s like you’ve let go of a child’s hand and you don’t know where he’s going to run off to.”

Keep both hands on until just the right time, he said, “until one hand says to the other, you’re ready to go.”

I love the way he puts things.

Then he said he wanted to show me something new on my backhand groundstroke. (I have a one-hander.)

He came over to my side of the net and demonstrated…a backhand circle! I thought I had put in my dues with the forehand.

George said that if I wanted to advance to the next level, the backhand loop was the way to go. And he said I showed that if I could do the forehand, I could do it on the other side. “Go on the Internet and watch Roger Federer do it," he said.

We tried about a dozen. Some went over, some did not. It felt weird.

“It’s hurting my brain,” I said.

George looked at me quizzically. “Nobody ever said that to me,” he said.

I guess that makes me unique. In any case, I had changed from the CMV channel to the tennis channel.