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.

Talking about many things to celebrate

Sitting on a bench at the bay

I once feared I would never see my grandchildren, and now they are 2 and almost 4, an event celebrated at a family cookout last week, followed by a double dose of deliciousness at Diane and David's in Wellfleet this weekend. Nell and Callen are both July babies, hence the family cookout last week.

This weekend we played at the bay (warm enough to swim in) and in tide pools the beach, ate at the dock, enjoyed ice cream that dripped all over us, and, due to the unusual heat, spent more time in the house than we would have otherwise done, but we played board games and talked, and I soaked all that up also, because the "scenery" in Diane's deck garden is beautiful also, and just looking at my grandchildren's beautiful faces was scenery enough. Not to mention, which is what I just did, enjoying two of my own "babies," Ben and Joe, and talking on the phone to Katie.

I thought I would never find my watch, but it miraculously appeared, and I feared I would never get that darn stitch out, but guess what, I did.

Last time I wrote, I sounded so frustrated, and then, sorry to say, I disappeared.

I didn't actually think the stitch would be in my cheek forever, but I wasn't sure how I would get it out. I finally went to the CVS Minute Clinic in Northampton, waited less than five minutes, and a lovely nurse practitioner removed the stitch. The area still doesn’t look great because I’m applying Efudex, the chemotherapy cream to it.

The one that I was worried about, on my wrist, also just needs Efudex, while one at my neck, which seems to have disappeared, is going to need a Mohs surgery.  I thought that because it was darker, it was a melanoma, but the one on my wrist was just more of the same.

With the birthday kids

I was wrong about the misplaced watch, also. I thought that because I couldn’t find my watch, I was losing my mind, a thought process that is the opposite of what Susan Krauss Whitbourne Ph.D., suggested people do in a piece headlined, “Mindlessness andMemory Slips: How to Find What You’ve Lost.”

“Don't jump to conclusions that you're losing your mental abilities,” she writes.

I actually followed the recommended steps.

“Instead of panicking, sit down and think.  Reconstruct the series of steps you followed when you put the item down. Remind yourself of what you were thinking and feeling. Context-dependent memory, in which you put yourself in the same frame of mind, is your best friend right now. You need to reconstruct the entire scenario mentally, walking through it like a crime scene.”

In a New Yorker essay, When Things Go Missing, Kathryn Shultz wrote, "At best, our failure to locate something that we ourselves last handled suggests that our memory is shot; at worst, it calls into question the very nature and continuity of selfhood. (If you’ve ever lost something that you deliberately stashed away for safekeeping, you know that the resulting frustration stems not just from a failure of memory but from a failure of inference. As one astute Internet commentator asked, “Why is it so hard to think like myself?”) Part of what makes loss such a surprisingly complicated phenomenon, then, is that it is inextricable from the extremely complicated phenomenon of human cognition.

This entanglement becomes more fraught as we grow older. Beyond a certain age, every act of losing gets subjected to an extra layer of scrutiny, in case what you have actually lost is your mind. Most such acts don’t indicate pathology, of course, but real mental decline does manifest partly as an uptick in lost things."

She continues, "No wonder losing things, even trivial things, can be so upsetting. Regardless of what goes missing, loss puts us in our place; it confronts us with lack of order and loss of control and the fleeting nature of existence. When Patti Smith gives up on finding her black coat, she imagines that, together with all of the world’s other missing objects, it has gone to dwell in a place her husband liked to call the Valley of Lost Things."

I really think that is where my cherry red watch went. It was one of my favorites. And then it simply disappeared. Either that or someone at the jewelry store absconded with it. When I gave up looking for it, at least I had some closure.

I sensed that the purple watch might have joined it. Either that, or it was at the BF’s house. But he said he looked all over and couldn't find it.

The other day I was lying on his floor doing one of the exercises that my occupational therapist has prescribed for strengthening my rhomboids. Did I say I have now added an occupational therapist to my long list of experts? Probably not. The goal is to loosen up the tendons in my hands and wrists . Graft vs. host disease of the skin has tightened them up to the extent that my left hand won’t open all the way when I try to lay it flat.

The light therapy, ECP, has loosened up my fascia and skin, but not enough in my hands. In yoga positions such as down dog, my left hand looks like a claw, and I’m working towards flattening it out. The rhomboid strengthening is partially because it’s all tied together and also because of the chronic pain around my left shoulder blade.

As I was lying on the floor, I turned my head sideways and saw something purple under the bench. It was my watch. I whooped and hollered for joy!

I was not crazy after all. A wonderful sense of closure floated over me. I have to think about why my default was to blame myself, but, judging from the passages I quoted, that is a common thing to do.

Here’s something I wrote about once being the Queen of Rashes. My skin isn’t so great, and it is really uncomfortable to cover up as much as I do at the beach, but I’m glad that that was then and this is now.

When dreams come true, it's kind of freaky

On Sunday night I dreamt three things.

1.     I was playing tennis, and my forehand would not go over the net. Someone said I had to get under it more. I tried, and got some, but not all, over.

2.     I bumped into a friend with whom I had had a fallout. He was walking towards the parking lot of The Republican. “Happy New Year!” I said. He looked back and said, “Same to you.”

3.     I had parked my car in the gated lot at work. When I went in to get it, I realized that I needed a key card to get out. I was afraid I would be stuck inside. But I waited a while until a car went out and I followed that driver, and the gate opened and I got out.

On Monday, these things happened.

1.     I was playing tennis, and my forehand kept going into the net. I told my doubles partner that this had happened in my dream, that I got under the ball, and it went over. I tried it. It got a little better.

2.     I went into Starbucks and bumped into the friend I had dreamt about. I told him I dreamt about him. He asked if it was bad. I said that no, I had just wished him Happy New Year. So in real life, I wished him Happy New Year. He wished the same to me.

3.      I parked in the garage in Northampton later that day and went to do some errands. When I got back to my car, I realized that I had lost the ticket. I went to the pay station and pressed the Lost Ticket button. I would have to pay $20.

I canceled the request and wandered around the garage, retracing my steps to try to figure out where the ticket had fallen out of my pocket. No luck. I walked out to see if I could get a new ticket, but it needed the weight of a car. By this time it was pretty late.

A young couple walked into the garage after paying for their “get out of the garage” ticket at the pay station. I asked what they thought would happen if I drove my car out after them. He said that probably the bar would come crashing down on my car. I got an idea. I asked if, for a few bucks, they would drive out and then drive back around to get a ticket and then back out and hand it to me. The guy said, sure. (I hope Dave Molnar isn’t reading this.)

They put their ticket receipt into the machine, drove out and around, got a new ticket and handed it to me. Success! We all smiled. I went to give him the dollar bills I had pulled out of my purse. He said that he wouldn’t take it for a favor. I thanked him and said that it would come back around, and someone would do a favor for him. We went our separate ways, smiles all around.

So….Last night I dreamt that I needed to go on a diet to lose five pounds. Does that mean I need to do it?

I am not overweight but I know the wishful thinking behind the dream. I am not happy with the way that mygraft vs. host disease of the skin has caused my stomach to stick out. It is more than being of a certain age. It has made some of my clothes unwearable and some just plain uncomfortable.  I know it’s a small price to pay, but that doesn’t make me like it any more. It has been described as feeling like there is a band around your stomach. It has to do with the fascia, the layer beneath the skin. Losing weight, alas, isn’t going to do anything for it. That is why I keep getting the ECP, or extracorporeal photopheresis, aka light therapy, aka sunburn of my blood, which has helped soften my skin and keep it from hardening more but alas has not done anything for the popping out thing.

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.

To Boston and back in a day

I couldn't complain about the musical taste of the driver who took me to Boston yesterday because,

1) It wasn't my car
2) He wasn't my kid
3) It would have sounded old-ladyish to ask him to turn the radio down, and,
4) I knew he wouldn't have received it well if I had asked, "Could we listen to NPR instead of to rap?"

But he seemed to understand when I asked if he would change the station when a singer wailed, over and over, "I miss my dog, I miss my dog, I miss my dog!"

I told him I loved my own dog very much and it upset me to hear those words.

Of course I also can't complain because the ride was covered by insurance and I got to doze on the way there and back. It was a one-day excursion to Brigham and Women's Hospital for me to check in with one of my slew of doctors, a gastroenterologist, who I see now and again for follow-ups on my graft vs. host of the digestive tract. I wondered if stomach problems that I have had for the last two weeks were related to a flare-up; he said that it was hard to tell and that it might just be a virus that is taking its time. If I am not better in a week I will probably be facing another endoscopy. I wonder if it is from stress.

He is one of the rare doctors who runs on time.

As usual, I brought enough reading material to last for hours.

When I was called on time, I was careful not to say, as I did at my last visit in a similar circumstance, "I think I might faint!" As you can imagine, the nurse at that time looked at me in alarm. Not a good thing to say in a doctor's office.

I was tired when I got home, even though I had slept in the car. Not a good kind of tired. I put on my running clothes because in the not-to-distant past even a short jog would have perked me up. But then I remembered that I had decided the running gods were telling me to stop because I have been unable to find a new version of the neutral trail-running shoes that are the only ones Ken Holt likes for me.

The peanut gallery and even Dr. Berger, an avid runner who until recently asked me when I was going to run the Saint Patrick's Race again, have said that especially with the graft. vs. host, my body might not be able to handle it any more without injury. Actually Dr. Berger said I probably couldn't run the same distances as before, which is not the same thing as totally stopping. I think I would be happy with just a couple of miles a few times a week, starting with a walk-run instead of just running like last time when I re-injured my toe.

I called the Northampton Running Store, where the real runners work, including Northampton's own Nancy Conz, and explained my dilemma, which is that Ken Holt hates most of the shoes that I buy.

She said she knew of his reputation for toughness and added, "Ken Holt needs to come into the store to see what we have."

What they have sounds promising, so tomorrow I might just go up there to take a look. Perks me up to think about it.

How not to start your day

How would you like to start your day?

(a) With a smile
(b) With a gulp of something awful, then a grimace and a groan.

You probably answered (a). I would chose that too, and on special occasions I do, forgoing (b), which is caused by mixing 5 tablets of Exjade in water, doing the gulp thing, and then, to do it right and thereby prolong the distasteful task, adding more water to absorb the little leftover pieces and drinking some more.

Then, wait 30 minutes while it does its work of removing excess iron from the body through a process called chelating in which it attaches to the iron and carries it out.

During which time, drink coffee (the wonder drug!) to mask the nausea.

I bring this up because although I no longer report my counts, which thankfully is very yesterday since most everything is where it is supposed to be, I noticed at my appointment Thursday that my ferritin had gone up, while the point of this battle is to make it go down.

It was 1832 (normal is 10-170) compared to about 1400 three months ago.

Melissa said that by taking the Exjade and getting a therapeutic phlebotomy every two months, I am doing all the right things. The number is influenced by other factors, such as graft vs. host disease, and we don't want to do any more for that because it would mean taking more prednisone.

All is well, though.

The timer just went off and I can eat my toast.

Adventures in Boston

I am not talking about the kinds of adventures I had in Europe, but rather about going to Dana-Farber yesterday and to Brigham and Women's hospital today.

There is nothing seriously wrong with me. It's just that I have been haunted by the throwing up sickness for about a week. I called Melissa and she said it did not sound like flu because I have no other symptoms. But I could feel that I was getting dehydrated, and she said to go see her, have some blood work done and get some fluids.

Ativan helps, but I couldn't take it while driving. Joe had an important meeting or he would have taken me. Plus, he knows what it's like for me to throw up in his car...into a plastic bag with a hole in the bottom, no less. I wouldn't have asked anyone else, so I set out yesterday with my plastic bag and some saltines.

I made it in OK and was relieved to see that my labs are fine.

After getting that out of the way, I told Melissa that my reason for coming was really to show her my new Spanish boots. She said that she had noticed them right away, so I was very gratified...although still nauseous.

First in the line of suspects is the Exjade. I didn't take it during my trip and felt just fine. As soon as I took it at home, up it came. I took a break for a couple of days, downed the five pills dissolved in water again, and got sick again. She said to just stop taking it. Free at last!

Since my hematocrit continues to be normal, on my next visit I will schedule a "therapeutic phlebotomy" appointment as another way to get rid of the excess ferritin that accumulated in my liver after multiple blood transfusions.

Dr. Alyea came over while I was in the infusion room and asked if I had watched any of the Australian Open. When he talks tennis I know that I am not making medical history. He was accompanied by another doctor and introduced me as an excellent tennis player. I told him that wouldn't have described me during the past week, and he said we'd get my insides straightened out so I can get back on my game.

He said I should take a booster of increased prednisone for about five days because when you're on a low dose like mine – 5 mgs. a day – your body can forget to produce enough on its own (or something like that) and a booster would help me feel better.

Meanwhile, on to the award for the most annoying nurse of the day:

When she was reviewing my medications before the endoscopy today, she asked why I take the drug Kayexalate. I said I take it because my potassium was high, but with a once-a-week dose it is fine.

"Are you in kidney failure?" she asked. "That's what high potassium means," she said, or something like that.

I told her that I was in kidney failure three-and-a-half years ago but that I am fine now.

She eyed me suspiciously, as though I had no clue whether I was in kidney failure or not.

After the procedure when she was removing my IV, she started in on me again.

"Have you ever seen a nephrologist?" she asked. Since I happen to have seen a nephrologist (a doctor who specializes in kidney care) I knew what that meant, although when I first heard I was seeing one of those, I thought they said I was seeing a necrologist in preparation for my death.

I repeated that my kidneys are FINE.

With that she finished up with my discharge instructions. And wearing the Massachusetts Academy of Ballet sweatpants that I had put on earlier in the morning, I pirouetted out of the hospital.

Ouch

My two joyful runs up and down little hills in Central Park took a toll on my legs, specifically my quads, which ached in the same way they do after the long downhill in the 10-K St. Patrick's Road Race.

This was the mini-version. I didn't run on Monday, but I did walk a lot, including going up and down a gazillian subway steps. Going up stairs was fine; going down killed. "Ouch ouch ouch," I said going down each step. You can mumble to yourself to your heart's delight in New York, and nobody will pay any attention.

My travels included a trip to Lower Manhattan to visit PJ in her new digs. She made a good healthful lunch with brownies and strong coffee for dessert. We chatted about this and that and compared notes about our Graft vs. Host Disease and our view of life post-transplant. Having met in the blogosphere, we have discovered in real-life that we are kindred spirits. There is nothing like talking to someone who is almost exactly on the same page.

Monday's travelogue also includes an excellent pizza for dinner at Lombardi's, America's first pizzeria.

Yesterday, Katie and I went to the Frick Museum with my high school friend Pam and my cousin Jeanne's daughter, Amanda. This art collection is housed in the 1913 mansion on 70th Street and Fifth Avenue built by coke and steel industrialist Henry Clay Frick. He collected the art on display, including works by Rembrandt, El Greco and Vermeer. The furnishings, decorative arts, sculpture and architecture are as amazing as the paintings.

We found the bench where I used to sit in high school. I'd stare at the eighteenth-century portraits and have my high school thoughts and the men and women in the paintings would gaze back and say, "Get over it."

(No, I wasn't hearing voices. It is just incredibly calm and beautiful and takes you into another world.)

Yesterday I ran in the park again. It didn't feel as great, and my legs still hurt a little. But if you want to be a runner, you have to accept that kind of day as groundwork for the better ones. Later in the afternoon, after Katie and I sat and read in a Starbucks, I had such shooting knife-like pains in my heel that I had to lean on her.

I don't know if that was the plantar fasciitis or the neuropathy which, despite medicine (neurontin), still keeps my feet partly numb and tingly most of the time, with occasional sharp pains.

In any case, it went away. I probably won't run today, but I can't sit in Jeanne's apartment, either. Katie and I are heading later to the main branch of the New York Public Library to read in its magnificent Rose Reading Room. We'll probably take a bus, but I love walking in New York too much to take it all the way.

The long wait was worth it

I always expect to wait in the clinic for a while before my checkup, but today the waiting time was close to a record: two hours. I came, as usual, prepared with today's New York Times, leftover sections from yesterday, the book I am currently reading ("The Story of Edgar Sawtelle") and my little blue notebook, in case I need to jot down a question or a random thought.

I went through the newspaper and was reading the book when I finally got into a room. Sometimes I get caught up in thinking that delay signals bad news for me, and then my heart rate picks up and panic sets in. Today, though, I did a pretty good job of keeping the lid on. Maybe it was because I was so tired. I almost fell asleep in the chair. I did, however, have to resist my impulse to run into the hall, grab anyone with a white coat, and say to them, "Please, just turn on the computer and tell me my counts!"

Today I was scheduled with nurse practitioner Melissa Cochran. Finally, she came in. I knew the delay wasn't her fault; sometimes the whole system just seems to get incredibly backed up. Melissa apologized for the wait and asked me how I was feeling. I said generally pretty good, although I've been having some stomach problems.

She turned on the computer.
Drum roll ...

My white blood count was up to 3.8, in the normal range of 3.8-9.2. I can't remember when my WBC was last in the threes.
Hematocrit was up to 31.1 (normal is 34.8-43.6). Hurray for Aranesp!

Platelets were down a little, from 141 ten days ago to 133 today. (Normal is 155-410.) But 133 sounds good compared to my low of 4 during my last hospital stay.

If the counts are low, I usually toss the printout.
Today, I kept it. After quite a bit of worrying during the past week, I was, naturally, very happy.

Plus, Melissa said I could get a coffee for the drive home. By now it was rush hour in Boston, and I knew that door-to-door the drive would be at least two hours, so I was happy I could get coffee.

For the first time, I walked into a Starbucks and got a coffee.
Now, that felt normal.