Thursday, September 6, 2018

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.

1 comment:

Unknown said...

Beautifully written post! Hope the rash on your face gets better. So sorry you're having to deal with it, but I have faith it will become a thing of the past, you spunky girl.:)