For starters, birthday kisses from the dog

The first words out of my mouth today (at the crack of dawn, as my father used to say) were, "Go away, it's my birthday," but when the dog who doesn't bark made her intense yelping sound, I got out of bed and got down on the floor for our morning routine.

My arm over her back, her paw over my arm. I rub her belly and back and we look into each others' eyes. That is my morning medicine. I tried to take a photo, as you can see, but she doesn't like it. She went across the room and I tried it again. The sexy attire I'm wearing is one of my father's T-shirts. I had a drawer full of them and gave a few away and now I think I gave away too many because I could wear this one down to shreds. I talk about my mother a lot, but a photo of him pops up at odd

Gray haired ladies

times when I'm looking for something so I believe he's around also. I think he would be (I mean, I think he is) proud of my serve. He was proud of everything I did but worried about my serve. He wanted me to take the racquet back further down my back. I think I finally figured it out, thanks, of course, to serving lessons with George. It's not that hard but I twisted it and put a little slice on it.

Hi Dad!

You don't want to use the word torture for things that aren't really torturous, in light of all the horrible things in the world. Taking it down a level, in the past couple of days, people found different ways to "torture" me. First, on Thursday, when I checked in at Dana-Farber for my checkup with Melissa, the intake guy asked if I wanted them to leave the needle in, after the blood draw, so that it could be used at my next procedure, at 4 p.m., the ECP at the Kraft Family Blood Donor Center. Nobody ever asked me that before, but I said sure. Tina, a nurse who became my friend during my first year or so of ECP, had changed jobs and was doing the blood draws on Yawkey Two. She came over and explained the required needle to the nurse. The nurse got all FARBLUNGET.  Instead of putting in the required bigger needle, she did the usual one and slapped a bandaid on. This was after Tina had called my nurse Deb at the Kraft Center to confirm what I would need. Later when I got there and she asked if nurse number 1 had left a needle in and I said she hadn't, she said, sarcastically, "Of course she didn't."

So I got stuck three times instead of two.

My appointment with Melissa was mostly about dermatology. She said she would try to straighten out the confused state of affairs having to do with three dermatologists telling me three different things to do about my skin. Especially my hands, with each of them contradicting the other on how to deal with the pointillist canvas of pre-cancers and who knows what. But I don't want to ruin the day by getting too much into that.

My numbers were great. My platelets were normal, yay! I used to get the printout but I don't anymore. I know that normal platelet range starts at 160, and when I heard 190-something that was all I needed to hear. If you search the blog for "platelet," you'll see that I've always had a platelet problem.

Dr. Marty came in with a new doc on the block. We gave each other a hug. He explained to the new doc how we go way back. We laughed about what happened at last year's US Open when I had a crazy, itchy, burning rash and cold sores around and on my lips having to do with a "perfect storm" of decreasing Valtrex, an antiviral, and using Efudex, the chemotherapy cream. I wrote him and Melissa, and almost as soon as I sent it, he replied, "Get a selfie with Nadal," because I said that's who I was watching from the nosebleed seats. I wrote back that he was too far, and he said something along the lines of tell him to come up to you. As for the lips, I think he said to go back up on the Valtrex and use Vaseline. He had already given me some good medicine by replying so quickly and making me laugh.

Oh I almost forgot the other "torture."

At occupational therapy, Karen, the therapist, made me a hand brace to open up my left hand while I sleep. I sleep with my hands curled up into fists underneath my chin. Now I won't be able to do it. Together with hand exercises (when I do them), my hand is hopefully going to be able to flatten out in yoga (or any other time I want it to) and my hands will hopefully be able to get into "prayer position," the inability to do so having to do with graft vs. host of the skin affecting my fascia. In general, we don't want it to turn into a claw. I texted the photo to the kids and Katie said that looking on the bright side (if I can sleep) I'll be able to do a better down dog, which is just what I was thinking also.

I was walking around with the backyard birthday photos, at 77 Coronado St., Atlantic Beach, with Jane and Michael Kass in them and now I can't find them. They seem to have morphed into other beach photos. They'll turn up next time I'm looking for something else. They're such good memories. One of these days maybe I'll recreate something alone the lines of what my Vassar classmate, Amy Drake and I, did after college, driving down the coast (all the way from Portland, Oregon!) to LA. Now I should stop and get ready for a little trip to Fairfield for a little celebration to see some of my favorite people and talk to others.

I'm ether 65 or 10. Who knew?

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.

The trouble with my tongue

It turns out that the problem with my tongue is thrush, a yeast infection brought on by all the antibiotics I have taken recently, both to treat my pneumonia and given routinely with the kidney surgery.

Dr. Goguen prescribed lozenges and a mouthwash. If it isn't gone in a month she will have to do a biopsy, but she seemed pretty certain that won't be necessary. This is a big relief because the surgeon who removed my tooth on Thursday wrote down that he saw signs of dysplasia: abnormal cells. Naturally that made me suspect that I might need more surgery on my tongue.

After that I went across the street to the Kraft Blood Donor Center for my "therapeutic phlebotomy," withdrawal of a bag of blood to help lower the amount of excess ferritin being stored in my liver due to all the transfusions I had. I am trying to schedule this once a month instead of taking a daily dose of the nauseating Exjade, which also lowers ferritin over a long time period.

So far, so good. The only problem left to address was the painful sores on my lips. Katie, who had driven me to Boston, went with me back to Dana-Farber so that Dr. Alyea and Melissa could take a look. The viral culture came back negative, so it is a mystery. I am going to try increasing my dosage of Valtrex, the anti-viral I already take. I tried this a couple of weeks ago to no avail, but they want me to try it again. In the meantime Melissa is scheduling me with one of their dentists who deals with this kind of thing.

So, another specialist. Sigh.

Meanwhile, Dr. Alyea said he might consider a topical steroid if it comes to that.

Back home, I could barely eat my dinner...again. I open my mouth wide enough to get food in without touching my lips, and then I nibble with my front teeth like a little rabbit. Last week's extraction makes it difficult to chew on the right side, which is sore, and the left side is already missing three teeth.

In a mother-child role reversal, Katie said I had to eat something. She pulled the applesauce out of the refrigerator, brought a bowl and spoon over and asked me how much. Washing the applesauce down with ice cream, I am feeling better now.

Laments of a pill-popper

One down, 21 to go.

When I learned that my insurance no longer covers magnesium, I thought it was a good time to ask Melissa if I still needed to take it. She said I could stop.

My 21 pills does not include the once-weekly solution of Kayexalate, the grainy stuff I dissolve in water to keep my once-high potassium within normal limits. It's not as nauseating as the Exjade I take to lower my ferritin, but it's pretty gross.

Organizing my meds for my trip to Spain, and making sure I have enough plus extras, is a bit of a task.

If I read all the side effects of all my pills, I would probably freak out.

I take several drugs as preventatives because the prednisone inhibits my immune system.

When I saw the infectious disease specialist Dr. Marty on Monday, I asked him, "When can I stop taking the Valtrex (an anti-viral)"?

Answer: "When you stop taking prednisone."

 I already knew what he would say because I have asked before, yet I couldn't help but ask again. Dr. Marty just smiled.

I suppose I would get the same answer to the question, "When can I stop taking the Bactrim (an anti-bacterial used to prevent pneumonia)"?

And "When will little things stop popping up on my hands and face (and tongue) that sometimes turn into skin cancers?"

OK, so, the big question: "When can I stop taking prednisone?"

Answer: When my liver function returns to normal.

Melissa said on Monday that although my numbers were a little lower (a good direction in this instance), they were not low enough to change my prednisone dose.

It's only five mg. a day, down from a high of 20 when I was all puffed up, but still, you can see the effect it has on everything else, including weakening the muscles in my legs.

I shouldn't complain. I am alive and well and going to Spain on Sunday, toting my pills minus one.

Goodbye Voriconozole

What with the slight trauma from last week's "face fry," which, by the way, is now peeling like a bad sunburn would, I didn't get around to mentioning some news from my Dana-Farber visit.

Dr. Alyea and Dr. Marty said they were letting me stop the Voriconozole, aka Vori, an anti-fungal drug I have been taking for more than three years. Anyone who takes a lot of pills knows that it lightens your load to get rid of any of them. This one, taken twice a day, felt especially weighty, tied as it was to the fungal infections I repeatedly got.

It makes your skin especially sun-sensitive and is partly responsible for the dark spots on my neck and face. Last spring and summer I got a lot of sun exposure from dog-walking, running, and, of course tennis, often played where there was no shade. I wore a hat and applied sunscreen, but there's only so much you can do.

Alyea's stated reasoning: "We have to get you ready for outside tennis."

Gotta love that guy.

Back home when I pulled out my bag of pills to put them in their boxes for the week, I took out the Vori and slid it to the end of the table. Woo hoo!

I also got to decrease my dose of magnesium from one pill three times a day to just once a day. I took magnesium for support starting during my hospitalization and just kept taking it. Another sign of forward movement.

But then there's the prednisone, which I won't be able to stop for quite a while. My liver function is better, and I asked if I could go down from 5 mg. a day to alternating 5 with 2.5, which I did once before.  Alyea pointed out that when I did that, my liver got worse again. I know that 5 is a small dose, but I still would like to get off it, which would mean lowering my pill load even more because then I could get off the preventatives Bactrim and Valtrex.

He pointed out that he treats some bone marrow transplant patients who stay on prednisone indefinitely.

And, he reminded me, "This is a long haul."

That was sobering to hear.

I don't think I'll ask about the prednisone again. I'll just be thankful it is keeping the GVHD of the liver in check and that at this low dose, I don't have any of the side effects I had when I took more.