Coming soon: Steroid injections in my cuticles

If you know me at all, you know I like to do things differently. There were the three Caesareans and the four stem cell transplants, the coma followed by the "your mom might not make it through the night" event, the three-plus months in the hospital, incidental discovery of kidney lesion, and the graft vs. host disease of the skin, requiring a couple of years of my blood getting taken out, zapped with radiation and put back in, a.k.a. extracorporeal photopheresis for graft vs. host of the skin, or ECP, the fall on my head when I was running around the lake and the fall on my head two weeks later when I fell off my bike...

Well, those are just some of the things...

The ECP wasn't that unusual though unusual to me when I first heard that I needed it to fix parts of my skin that were hardening and getting lumpy and bumpy. I had weaned to every three weeks after starting by doing it every two weeks at the Kraft Family Blood Donor Center at Dana-Farber/Brigham and Women's. Maybe I did it for two years. I have to admit I lost track. I was going to keep cutting back but had to stop abruptly when the pandemic started. My skin stayed OK though, even though I went off prednisone after being on it for 12 years, as I described in this post. 

I was on such a small amount, 1 milligram, that going off it does not seem to be a cause of a new crazy thing: MY FINGERNAILS ARE FALLING OFF!

Just had to put that in caps...

OK, so, it's just one fingernail that fell off. OK, so I helped it off. It turned white, a sign, my fingernail specialist dermatologist said, that the nail had died. It was loose like a baby tooth, and I wiggled it off. Katie gave me a princess bandage so I could cover it up.

Half of my fingernails are OK, But the others are discolored and ridged. 

A fingernail biopsy showed that I have GVHD of the fingernail, or more precisely, fingernails. Yes that is a thing. 

At the end of this month, I have an appointment in Worcester with a dermatologist who specializes in diseases of the nail. She is going to give me steroid injections in my cuticles. On the bright side, she is lovely, as I explained here. 

Enough of that for now at least.

I am not sure if I mentioned that I got the fourth shot that immune compromised people could get.  That became my booster, and the first three became me original series, or something like that. Same as when I got my 1st booster a little early, I didn't have to do anything other than answer yes, when I signed up, to the question of was immunocompromised. Moving off the health topics...

It has been nice to have some people over for coffee with the COVID situation easing. 

One of the friends brought me cheerful flowers that have been cheering me up.

Warm Wisconsin welcome, bad behavior on tennis court, & another tooth bites the dust

With new friend Mary Robinson at Wisconsin Welcome sign

I Went to Wisconsin without my laptop and neglected the blog. I did a little writing on the rehabbed iPad (I had dropped it almost as soon as I got it) and I'm sure it's not complicated but I have a leap to make before I can write a blog post.

The MacBook Air is my version of the old-fashioned well-sharpened pencil on a favorite pad, I guess.

Actually I went to Chicago, then on to Wisconsin. It was with my boyfriend. Just trying that on for size. I don't know what to say. He's not a boy.  Boyfriend and girlfriend kinda work, but not totally at a certain age.

In previous blog posts I wrote that "a friend" drove me to Dana-Farber. It's time to be a little more specific while at the same time not revealing too much.

I went to meet his sisters and extended family. So that was a big step. There are sensitive issues.

My "friend" and I have discussed the awkwardness of finding the right name for the significant other, or as my mother used to say, gentleman caller.

Not a partner: too much like you're dancing or in a business arrangement. Although I hear that a lot of people are using it. Not a companion, which sounds more like an aide. Or beau? I used beau for a while but then some people got annoyed and said to please use his name.

I like meeting people and finding out about them (occupational necessities), so I was only a little nervous about the trip. He said, "Just be yourself."

They were so friendly and welcoming, and interesting, that I was immediately relaxed and did just that.

I think it went well, but there were a few moments when I wondered what they thought. For example, we were in the middle of lunch at his sister-in-law's when my fingers decided to do back bends and cramp. Trying probably unsuccessfully to be subtle, I pulled at my thumb to try to straighten it out. His niece asked if I was OK. At the moment I wasn't, because when this happens it hurts a lot.

It isn't just my thumbs. My other fingers can bend backwards also. I couldn't do this if I tried, but when it happens they get a mind of their own. One doctor said this is related to my graft vs. host disease of the skin, though I've heard that it happens to other people who didn't get a stem cell transplant.

 I know that the limited range in my wrists, which is a problem in yoga, comes from the GVHD. (Sorry former and current news peeps, this is an oft-used acronym. The whole terms is a mouthful.)

My beau's sister-in-law said it could be low salt, and she gave me some Gatorade. It worked. I was so happy that I flapped my freed-up fingers around. She kindly gave me a bottle to take with me in case it happened again.

I seemed to have a connecting point with many of his relatives. For example, I talked to one about our shared chemotherapy after effect, neuropathy in our feet. For people who don't have it, it's hard to understand how your feet can be simultaneously numb and painful. I wrote about it in this article about the pain of having and treating neuropathy. 

After a night in Chicago, we drove some four hours to Stevens Point, Wisconsin, my friend's hometown. (How about special friend? Nah.) We had two lovely runs in Iverson Park, along a trail padded by pine needles and leaves.

We also went to Waupaca and Appleton. It was a packed itinerary. I got an actual state map and enjoyed trying to find my bearings...and attempting to fold it back the proper way.

On the drive back, we stopped at a tourist attraction, the Mars Cheese Castle. At first, when Mary mentioned it, I thought for a moment that it was actually made out of cheese! It isn't made of cheese, but there is a lot of it.

I didn't get any cheese because I'm toying with the no sugar, no dairy, diet. I got some pushback on it. It seems like there should be a way to make some changes but adhere to moderation, not total elimination of certain foods. In any case I didn't get very far without eating ice cream.

 It was my birthday on Friday, and while writing the beginning part of the blog, I was eating a large piece of my birthday carrot cake. It's hard to refrain from cake on your birthday. It's carrot cake so it must have something good for you in it. Those little frosted carrots on the top, per chance?

The day before, I had my 13th tooth pulled. As directed by the dental surgeon, I took two Ativan (two milligrams total). I really wanted coffee afterwards. My chauffeur obliged. He was a good sport. I don't remember doing this, but I believed him when he said I was falling all over the place.

I vaguely remember going into the Odyssey Bookshop and picking out three books for him to buy me. (Educated, Less, and the first Louise Penny book, recommended by his sisters and echoed by friends.)

Unhappy camper

The next day I said we could return one because it seemed like a lot. He said it's only three books. Did I say he's a mensch? Also, my dog has a crush on him.

There is a string hanging down from the stitch in my gum where the tooth used to be. It is hard to avoid playing with it with my tongue. It hurts on and off, more so at night. The oxycodone makes me have hallucinatory dreams, but it works the best.  I need to repeat this or else people will think I'm a drug addict: My doctors don't want me to take much Tylenol because it is bad for the liver, in which I have some graft vs. host disease. Advil and the others are not good either, for a variety of reasons.

On my birthday we went to George's smaller (than Wednesday) clinic at the Holyoke Canoe Club. It was a fun time, as usual.

But sadly, in other ways, the stars do not seem to be aligned over my happy place, specifically in our normally relaxed, low-key, Saturday and Tuesday group.

My other groups are set up so that we plan ahead to have an even number. In this group, whoever shows up, plays, so you might have one player at a time rotating in for the server.

It's not my first choice because you don't play a full set. But I realized that the socializing and coffee-drinking while waiting your turn is part of the fun.

If there are more than two people sitting, however, I get antsy. So I either leave or on occasion have asked someone to hit with me on another court. This still leaves one extra person so that anyone who wants to rest, gets a chance to do it.

Last week when a third extra person arrived, I asked another of the "sitters" if he wanted to go on another court to hit. It would still leave one to rotate in.  Believe me, I know what it's like to be tired, so I have compassion.

A player, "E," bellowed, "YOU SIT! We need to rest!"

Excuse me? I wondered, would he direct a guy this way? I think not. Was he being a bully? I believe he was. After I had my turn serving, I packed up to leave. With tears in my eyes. Nobody likes being yelled at. But in addition, for me, an element PTSD comes into play.

I went home to walk the dog. Who does not bark at me.

Saturday was even worse. I went to tennis despite having a bad night's sleep and being a little "off" because of the pain and the remnants of the night's drugs. When I got there, it looked like three would be sitting, but then another player arrived. So we had eight, two women and two men. I was excited. Good for real doubles.

We had some good rallies but they beat us, 6-1. It seemed like it would be obvious to switch partners. They were a stronger team, let's face it. I was off a beat, and so was my partner. I suggested switching, but my partner wanted a rematch. Actually, he INSISTED.

It started out OK, 1 to 1. Then this happened. A ball came right to my partner, just a little bit higher than his head. He ducked. Our coach, George, would say that a good player is always ready to back a partner up. But I guess I'm not that good. I said, "Oh, C, tell me if you want me to get it and I'll go for it."

I didn't think much of it because partners say things like this to each other all the time. And I didn't say it in an angry way, because who am I to get angry with a partner?

The next game when I was serving, a ball rolled half way into the court, near where he was standing at the service line. Etiquette, or just plain being reasonable, calls for the partner who is not serving to pick up the ball. He looked back at me and said, "You get it."

Normally talkative, he didn't say one word after that.

We lost the second set 6-1.

When we were sweeping the clay, he picked up the brush and lowered his head. He would not look up. I grabbed the line sweeper and walked alongside him. "What's the matter?" I asked. He wouldn't answer. I repeated the question. He glared at me.

"I hate you," he said.

"You're just as bad as R," he said, referring to a player who he thinks takes it too seriously. (First I put the whole name in and then took it out.)

"I don't criticize you when you make a mistake. Don't you tell me what to do," he said.

I was stunned.

I followed along for a while and said I was sorry, I wasn't criticizing.

He walked off the court to where George and a group of other players were sitting.

I went over to the other player cleaning their side of the court.

I asked if she heard what was going on and if she saw what had happened during the game. She said she saw him go silent after the point that I referenced.

She suggested that to clear the air, I should just repeat that I was sorry.

So I did it.

"C," I said, "I'm sorry."

He looked up at me with (sorry about the cliche) daggers in his eyes.

"Don't talk to me," he said.

WHAT?

How rude, how ungracious, how juvenile!

This person by the way has been a big supporter through the cancer stuff, and, I thought, a real friend.

You could psychoanalyze...maybe he was mad that the other guy was playing better, maybe he had a fight with his wife, maybe he got out on the wrong side of the bed....

But again, I ask, would he talk this way to a guy?

I can't imagine he would.

Meanwhile, I saw I had a missed call from Katie.

I walked over to the river and sat on a chair. And started crying so much that she probably thought something terrible had happened.

I said I wished I was tougher and had said, "Don't talk to me like that."

I was also crying because I was tired, because it had just been my birthday and my parents weren't there, because I thought of all the parties at Atlantic Beach, and because the sweet photo that my sister posted of the two of us and our mother and Sam in front of 77 Coronado Street made the memory so vivid, and because I lost another tooth and the absence of the tooth generated a dull ache as though the tooth were still there, and because I will need another bridge costing thousands of dollars, and because I thought I knew someone and it turned out he was just another bully on the playground.

Afterwards, my reaction made me think of that horrible presidential debate in which Hillary Clinton turned and smiled when Donald Trump was coming menacingly close to her, after which she wrote in her book that she wished she had said, "Back up you creep."

Clinton wrote, “Maybe I have over-learned the lesson of staying calm, biting my tongue, digging my fingernails into a clenched fist."

The author of an article in Quartz wrote, "The passage is a clear appeal to the women who supported her. And Clinton’s reaction is relatable to anyone who has been harassed or intimidated—even if it wasn’t live in front of the entire country—and didn’t immediately react.

Then again, that's how many of us were brought up, and there is something to be said in favor of staying calm.

In dermatology land, answers and loose ends

The same day that I wrote this post about my frustration in dermatology land, I got a call from a nurse who gave me the answers to one set of problems. I'm supposed to apply Efudex chemotherapy cream twice a day for two weeks to the spot on my cheek and twice a day for four weeks to my arms.

She said the divot in my thigh is more of a graft vs. host issue than a skin cancer issue. So now I will try to chase down my other doctor in the same practice, the one who gave me a cortisone shot last time and said to use Clobetasol (a strong corticosteroid) if the shot didn't work. When it turned out that insurance doesn't cover the expensive cream anymore, at first it seemed like the nurse was going to ask the doctor to look for an alternative. But when we last spoke she said that is more of a GVHD issue for my other doctor to address.

You might ask what's a little divot among the bubbles and ripples on my thighs? To me it's just one thing too many among the many other things that aren't supposed to be on my skin. And it's not that small. I said to someone, if you kept digging there you might get all the way to China.

Today or tomorrow I will get back on the phone and see if I can try to get in to see the other doctor, the one who specializes in subcutaneous dermatology. One doc for the top layer of my skin and another for the layers beneath it. Another trip to Boston, since, for insurance reasons, it's difficult to see them on the same day even though they're in the same office.

On the positive side, once I get past the frustration and get in to see them, they are very attentive and nice and I am confident they know what they're doing.

And since I have all these site-specific problems, I'm lucky to be at a world class medical center where there's a doctor who specializes in each one.

In a broader sense, think tongue, kidney, lung, feet (neuropathy) teeth, gut, eyes...OMG I am so far behind in following up with the last one but now I'm afraid that when I get there he'll ask where I have been. Still, must add to list.

Time to get a grip

I could write a book on not making a mountain out of a molehill, but while I am having a serving of cliches with my morning cup of coffee, I must say that when push comes to shove I am not always good at keeping catastrophic thoughts at bay.

Combine my natural tendencies with too much knowledge about the possibility of secondary cancers, and this is what you get. I have been having some GI problems and had already diagnosed myself with colon cancer or stomach cancer when I yesterday I completed the second of two tests my doctor had ordered. It turns out to not be too much of anything except a little Graft vs. Host Disease, and the treatment is the same as for my GVHD of the liver, which is to continue the low dose (2 mgs.) of prednisone that I take daily.

So far, so good, except that a short trip to Boston turned into a 12-hour day with me leaving home about 8:30 a.m. and getting back at 8:30 p.m.

I had called Dr. Lin's office to see if she could look at a spot on my arm on the same day, but when I didn't hear back I headed back home. About 2 p.m. as I drove past her office on Boylston Street, her office manager, Bernarda, called and said she could get me in at about 4:15. I have been worrying over this spot, which looks a little different than my squamous cells cancers, and in my rational mind I thought it was nothing or another squamous cell, and in my crazy mind I thought it was a melanoma.

It turned out to be either a keratoacanthoma, a non-invasive lesion that can look like squamous cell carcinoma, or maybe a squamous cell, but since it is hard to tell the difference, the treatment is usually to remove it. I was going to put a link, but they all come with magnified photos that are really gross.

I had the choice of just getting a piece grazed off to be sent for pathology, in which case I could play tennis but might have to return to get it removed, or just getting it excised (and still sent for pathology). I chose the latter just to get it done with and now have five stitches in my right arm.

As I sat at my computer canceling tennis for the next two weeks (including Judy Dixon's one-day immersion tennis camp, which I had forgotten about), I could hear my father's lament when he put up the flag on the fourth of July and said, "The summer's almost over!" I think he was already counting down to the end of his beloved outdoor tennis season. My mother would always shake her head.

Like father, like daughter, I thought, "The season's so short, and I just took two weeks out of it!"

Time to get a grip, and I don't mean the grip on my racquet. That immersion camp probably would have been too much for me anyway.

From doctors to Degas

I'm back from Boston after three doctors' appointments, lunch with PJ and a long walk on a beautiful balmy day to see the Degas exhibit at the Museum of Fine Arts. Might as well mix in some fun to balance the hours spent in medical offices.

My check-up was uneventful. Numbers were good, about the same as last time, except for a drop in my platelets from the 83 to 68. Melissa said she was not concerned. My liver function numbers are better, so I can try dropping the prednisone to 5 mg. a day.

Dr. Dana, the specialist at Mass. Eye and Ear, said that my dry eyes may or may not signal the onset of Graft vs. Host of the eye. I was reminded of the time when I wondered if my work at the newspaper was giving me carpal tunnel syndrome. A doctor told me that my symptoms might get worse or they might get better. In other words, who knows?

Dr. Dana said to use Restasis, eye drops that have varying amounts of success in helping dry eyes and hopefully staving off GVHD. Back home, eye doctor #1 had prescribed restasis, but then eye doctor #2 said he didn't like the drug and not to use it. Since doctor #3 is the expert, I'm going to give it a try.

As PJ, who now lives in New York, wrote on her blog, she went to Dana-Farber Tuesday for a second opinion. Since I happened to be in town, we met for lunch and, as she said, compared war stories. We had to laugh that while some people meet up at their favorite bar, restaurant or coffee shop, we got together at our favorite cancer center.

That afternoon I saw the exhibit Degas and the Nude, which shows a different side of the painter from the one many people know through his sculptures of dancers. Most often at museums I don't use the audio guide, but I got one this time and was glad I did. I learned a lot, and instead of having to read the explanations on the wall, I was free to just enjoy and appreciate.

On Wednesday, Dr. Iwamoto, the plastic surgeon, removed the wad of cotton that she had stitched over my graft. I was glad to see it go; it was small, but it had begun to feel like a bowling ball under my eye. She said the graft should take six to eight weeks to be absorbed into the skin. Right now it does not look pretty. She also said to be careful not to rub it, because it could fall off.

This morning as I woke up and stretched, I caught myself rubbing my eyes. Having that thing fall off would not be too much fun. I better be careful.

Waiting for the dermatologist

People aware of my comings and goings know about my ongoing effort to see the dermatologist.

About a year ago, she checked several spots on my face. They were not cancerous, but they were either red and flaky or discolored. She froze some spots off and gave me some cream, scheduling a recheck for six months. I seriously wanted this recheck, both because some of the spots remained and I wanted to rule out serious problems, and also because I thought that clearing up my skin would help me feel more like a normal person. (Not as important as getting my hair back, but still, a consideration.)

Due to cancellations for a variety of reasons, it looked like this visit was never going to happen.

You might wonder if this dermatologist even existed.

On June 21, I was sure it would work. One of her offices is on Route 9, the road I take to get to Dana-Farber. I scheduled a 10:15 a.m. appoinment, followed by my Dana-Farber appointment at 1. I got there 15 minutes late, having missed the medical building and then having to circle back along crowed Route 9. When I called, the receptionist said my appointment had been canceled.

I rescheduled for today at 3:30, following my clinic appointment at 11. Dr. Alyea had said it would be interesting to see if they made me wait. When I checked in, I told the receptionist I had been canceled for being 15 minutes late last time, and I hoped that they wouldn't keep me waiting any longer than that themselves.

Speaking up makes my children glare at me in restaurants. (As in telling the waitress, "Please take this burger back, it's undercooked.") They usually hiss at me, "Now she's going to spit in your food." Hey, I tell them, you're a valued consumer, and you have every right to point out problems politely.

At least today I didn't have to worry about the food.

I waited only 20 minutes and was put in a room. There, I waited another 45 minutes. It was getting late, and I faced the drive home, the hardest part of my day. I finished the New York Times and then started fuming. Next came the inner talk: Nobody died. Nobody is dropping bombs on me. Still, how about showing a little courtesy for the patient?

Wearing an exam gown, and squished in a chair next to my purse and my clothes, I leaned my head against the wall, poked by a piece of equipment on the wall behind me. I fell asleep. Finally, an aide poked her head in. She looked at me curiously, as if wondering why I was in there at all. She went to get the doctor, who came in saying she was very very sorry, someone had forgotten to put my folder out.

I told her my saga, and she said she was angry with the staff. She never would want anyone turned away for being 15 minutes late, since she knows that patients come from all over and often get stuck in traffic. She apologized for the last visit and for today, saying I seemed calmer than she felt about it.

Most importantly, she said she saw no signs of skin cancer. Although my graft vs. host disease has been in my gut, she said some of the redness could also be related to GVHD. She froze some of the spots off and gave me a different cream RX than last time. She also said that the redness and small blisters at the end of my nose could only be fixed by laser, which is not usually covered by insurance. I said I would make some phone calls.

Earlier in the day, I had an unexpectedly short visit at Dana-Farber. I thought Dr. Alyea would order an X-ray of my painful rib from this week's fall, but he said that even if an X-ray did show it was broken, you just let it heal on its own anyway. He thought that it was just bruised. Even though I was tearing my hair out over the incident, he said it was a common thing to do, and not to worry.

My counts remained about the same, good for me but not necessarily for "normal" people. My hematocrit, at 25.3, is still low. I'm apparently chewing up the cells that I am making. He said that this process should just go away by itself. Sodium was up one big whopping degree, to 126 (normal starts at 135) and potassium was hovering just about normal, at 5.3. (Normal is 3.5-5.0).

He lowered my prograf from .5 mg. twice a day to once a day, saying he thought this could help many of my problems. Glucose was the high end of normal, 105.

In two weeks I will get my cholesterol checked. Tonight I switched to no-cholesterol frozen yogurt (vanilla with fudge swirl).

It did not hit the spot.