That infiltrated feeling isn't a good one

Infiltrate

in-fil-treyt, in-fil-treyt

verb (used with object), in·fil·trat·ed, in·fil·trat·ing.
to filter into or through; permeate.
to cause to pass in by filtering.
to move into (an organization, country, territory, or the like) surreptitiously and gradually, especially with hostile intent.

In nursing, it has a specific meaning.

Infiltration occurs when I.V. fluid or medications leak into the surrounding tissue. Infiltration can be caused by improper placement or dislodgment of the catheter. Patient movement can cause the catheter to slip out or through the blood vessel lumen.

I present these definitions because on Wednesday at ECP, the light therapy on my blood, the needle in my right hand infiltrated. This has happened before. It is not the end of the world. But when it happens, it is painful. I usually know it the minute the needle goes in. It doesn't feel right.

Surveying the damage

Nancy, my nurse, put the large needle in my left arm, for the draw. (Drawing out my blood so that the white blood cells can be separated and treated with UVA light.) Rosalie, a nurse who had a different patient, came over to help with the return needle, the smaller one. She patted my arm and my hand vigorously to get a good vein. Actually it felt kind of like slapping. She put the needle in and went back to her patient.

I told my nurse that it hurt. She took one look and said it was infiltrated. She pulled it out. There was some extra blood. She had to bandage it up before she put the needle in a different spot. My right arm was unhappy.

Meanwhile, my left arm wasn't doing so great either. My hand had a bad case of pins and needles. You can't move your arm, so you can't shake it out. The needle in the crook of my created a dull ache.

For a while I was taking a little oxycodone before, because I had had a few bad instances of severe pain when the needle felt like it hit a nerve. I haven't even been bringing it for a while. But with both arms hurting, I said maybe I would in the future. (Tylenol doesn't do it. I can get oxycodone at ECP, but it's a major production, and Melissa had said to bring my own.)

A nice resident, new on the rotation, came over to talk. I gave him a brief history of my two-plus years at ECP, going back to when I asked my doctor why my abdomen felt like it had a bowling ball in it, and why there were ripples in my thighs, and he said it was graft vs. host disease of the skin.

He thanked me for the info. I should get a teaching fee! Then I fell asleep. When I woke up, it was almost time to leave. I wasn't sure how I slept through being that uncomfortable, but maybe it was a defense mechanism or something.

Three cheers for fake teeth and longterm friendship

Hiding behind chocolate mold

News flash: For the first time in as long as I can remember, I am able to chew on both sides of my mouth.

It was a big day when Dr. Badri Debian, of Holyoke Dental Associates, gave me my newest bridge a couple of weeks ago. For a while he had said I didn't need it because I still had enough teeth on my upper right to be able to chew on that side. It didn't seem so to me. I chewed so much on my left side that I wore down the bottom teeth and needed a bridge. But when I lost my thirteenth tooth last month on my right upper, he decided it was time.

I never knew that I would be spending so much time thinking about teeth, or lack thereof.

Friends asked how the bridge was glued in. I have a tooth in front, but not in back. For some reason this sounded funny, and we started cracking up.

So it turns out that I don't have a traditional bridge, which would be a fake tooth connected to two existing teeth.

A bridge supported by a tooth on one side is a Cantilever bridge, and that is what I have.

Here is another word that is new to me: a pontic. That is the technical term, or euphemism, for a fake tooth.  

I keep forgetting that I can use my right side now, so I still favor my left. It's not perfect, because I'm missing a bottom molar, so I don't have a great connection. 

Dr. Debian has my back. He gives me a good discount and is in my opinion, a mensch. But since I don't have dental insurance because dental insurance stinks for people in my situation, it might be good for the bite in my mouth but it takes a bite out of my bank account.

Anne with cacao pod

I'm behind on other news. My Vassar classmate Anne Outwater and I had an interesting visit to Taza Chocolate Factory, in Somerville. It was a busy couple of days. 

I crammed a lot in on that Wednesday, but when a friend (Anne) who lives in Tanzania says she is going to be in Boston and would like to visit a chocolate factory run by a fellow Vassar graduate, and it is the same day that you need to be at Dana-Farber at 4, and you have already promised to sub in a tennis group at 9 in the morning, what are you going to do except try to do it all?

Somehow it worked out. Getting there was crazy, though. As I neared my destination, I was thwarted by blocked-off streets. 

I later learned that it was because of the large public transit expansion affecting Union Square in Somerville. An employee from the chocolate factory talked me in. I almost gave up. But I got there on time for a little introduction and tour that included tasting a lot of stone ground dark chocolate of various textures and tastes. We learned that the higher the cacao levels, the more health benefits there are. Unfortunately I like milk chocolate better. But I'm learning to like dark chocolate.

I took a selfie with Anne but erased it because I had a big red mark on my nose, resulting from a zapping, or cryosurgery, on a precancerous spot. I conveniently displayed a mold by holding it over my nose. 

Afterwards we got in my car and went to Dana-Farber so she could sit with me while I got my blood treated. It was the only other time we would have together. Quite the difference from when we rode bikes around Prince Edward Island together and she placed a blue shield around us so that the dogs would not get us. 

Anne does not drive in Tanzania. I think I should have told her to close her eyes on the drive through Boston traffic. 

Anne has a Ph.D. in nursing and has an impressive job and title: Head of Department of Community Health Nursing at Muhimbili University of Health and Allied Sciences in Dar es Salaam, Tanzania. Before that, she was a medical officer in the peace corps. The nurses were impressed with her! She was also impressed by the nurses and interested in what they were doing. She got a quick lesson in ECP, or extracorporeal photopheresis for graft vs. host of the skin.

My compadres Larry and Lisa were also there. The three of us always come at 4 p.m. every other Wednesday. I don't know the name of the other man who is always there. Sometimes he is behind a screen. Due to traffic, we got there last, but I finished before Larry and Lisa, because they each use just one arm. I told Anne how it came about that I use two arms, one for drawing and the other for simultaneously returning. It was because one day Mark, my nurse for the day, came up and asked if I wanted to use two arms, and before I had a chance to balk, he put the second needle in.

Depending on where the nurse places the needle, I can sometimes use my right arm. But it was at an awkward place, so I couldn't. It was good that Anne was there to talk to. She was impressed with the nurses. When the procedure was finished, Mark walked Anne out to show her where to get the T. 

It was also a good thing I was going to Margaret and Nick's, because I was too tired to drive home.

My construction obstacles persisted, though. I have been to their house many times but got confused when getting off at the exit that I usually take off Route 128/95.  It looked different. I ended up where I didn't want to be and then had to circle around.

Margaret said the changes were due to something called the Add a Lane project. I was glad to hear I wasn't making it up and there was a reason for my confusion.

I had hoped that one of the doctors at ECP could remove the stitches from the Mohs surgery on a squamous cell cancer on my right temple. A doctor came over prepared to do it, but when he saw that it was running stitches, he said he couldn't; you need finer scissors and a better light. He asked Melissa to call ahead to the Faulkner Hospital Mohs Surgery Center to see if they could take me the next morning. He called it the Pregame. He said, in the meantime, to just go in the morning and assume they would see me. She texted me to ask if I could get there at 10:45. I was already on my way. Yay team!

The next day I drove home in the pouring rain. I went straight to a hair appointment that I had in Northampton. I don't have any construction-related explanations for getting there at the wrong time, 3 instead of 2. Getting out of my car, I couldn't open my umbrella. Getting soaked, I fumbled for my credit card to use in the meter. I dropped the card in the rain. I couldn't find it anywhere, so I thought maybe it was in my car. But I canceled the card anyway. This is a pain because a lot of things are attached to it.

The next day, I got a call from a man who said he found my card. He said he looked me up and found me via my website. He said he wanted me to know that he was a veteran and he wouldn't have tried to use the card. I thanked him profusely and said I had already canceled it. But it was nice to know that such a person existed.

Meanwhile, someone had gotten a hold of the number for my LL Bean card and put more than $2,000 in fake charges on it. The credit card company didn't catch it. I believe they should have. After I called, they removed all but one small charge. I told them it was also a fake charge. They said no problem, they would not charge me interest while they looked into it. They charged me interest and a late fee. I called and said to take it off. They said they would take it off and look into why there was a stray $58 charge on it...with interest. I said OK.

When I tried to use the card, it was rejected. I called to try to find out why. Of course as most people know, it is bad for your health to try to get through to a real person at a credit card company. You cannot just press zero. I yelled into the phone, agent, agent, agent. When I finally got a person, they said it was locked because I hadn't paid them the $58 even though it was in dispute.

They don't care, but I said that as soon it is resolved and I use my coupons, I'm going to cancel the card.

Sorry for the rant.

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.

Time for a double helping of alphabet soup

Today I had ECP.

Tomorrow I have PDT.

Time for alphabet soup in Boston.

OK, so by now you might be familiar with ECP. It's extracorporeal photopheresis, the internal sunburn, the UVA light therapy treating my graft vs. host of the skin. The blood burn. The thing I do every other week when I complain or mercifully don't complain about the drivers.

I was relieved to get a nice, polite one today. Two weeks ago another driver was late and rude. I started to get worked up. But Katie, who is home in between engagements, said, "Everyone calm down."

She told me she would drive me, which she did, and I had no complaints.

I went earlier today, at 1 instead of 4, so I could go to a community potluck for the content marketing company, Skyword. I want to write for some of their clients.

Over at the Kraft Family Blood Donor Center at Dana-Farber, I'm getting used to doing two needles. It takes two hours instead of three or even four. Not that I dislike the company – the nurses have become my friends – but I could think of something better to do than lying still with a needle, or needles, in my outstretched, immobile, arms. I passed the time by watching an episode of The Crown.

Then I took an Uber to Diane and David's so I could change my clothes and leave my bag before heading out to the WeWork shared working space near South Station.

Because we had gotten into traffic, I didn't have that much time for a turnaround, so I ended up taking another Uber. I hope I get some content writing so I can make up for those costs. It was a fun event in which I talked to some interesting people and went to a workshop on how to boost your freelance writing business.

It's a good thing I was wearing long sleeves: I had a bandage wrapped around each arm underneath my elbow, where the needle went. Pink with purple hearts. A good combination.

Determined not to take any more Ubers, I walked across the street from the cool WeWork co-working office space to South Station. Treated myself to a kids' size Pinkberry and thought about how nice the train station looked compared to when I moved to Boston eons ago and was mugged on a dark commuter rail platform...and called my father crying.

Tomorrow I have PDT, the face burn, or photodynamic therapy, in which Dr. Lin, or rather her assistant working a machine, burns the top layer of skin off of my face to head off any lurking skin cancers and get rid of thingies that are on the surface of my skin. In the long run a better alternative to zapping them but not fun while it is happening.

To recap, it feels like the worst sunburn ever. But you move a handheld blower around your face and think of something else and it the time goes by. I can't remember the exact time, but it is less than 15 minutes.

Then out to lunch and then back home to finish a writing assignment. I'm working on three stories in between all this medical stuff this week.

Oh, and on Monday I went to the dentist and found out that the enamel is wearing off on the outside of my "good" chewing side and I will need two root canals and two crowns.

I'll think about that tomorrow.
,

It's dangerous out there (on the tennis court)

I especially enjoy the round robins at The Enfield Tennis Club on Wednesdays like today before the light therapy (or ECP) at Dana-Farber. I had actually planned on going to pilates, knowing that it's good to work into your routine in general and hoping that specifically it might help my abdomen to protrude less (a result of the Graft. vs. Host of Skin.)

But when I got a call from Rebecca at the club saying they needed an eighth, I jumped at the chance.

Tennis is always more fun, but it didn't start out great. The player across from me hit me hard on my thigh. It was a stinger, probably because my skin is so sensitive. A few minutes later, she hit me on the calf. I bent over to rub it as tears welled up in my eyes.

At our level, we don't do these things on purpose, despite our old coach Rich Bray standing on the other side and saying, "Hit me, hit me," to improve our net game. But it is a shocker, especially twice in a row at the same speed. I said the understatement of the year – I have a problem with my skin – or something like that, maybe to explain my apparent lack of toughness.

The other three said maybe I should go sit out and call Marie from the front desk. But no way was I doing that, although my better instincts said I should ice.

Instead I said to myself, "There's no crying in tennis," and went back to my spot.

My serve, which had been pretty bad earlier, suddenly got better. I thanked the other player for knocking the bad serve out of me.

During the change in teams (we do three combinations), another player and I stood at the net talking about the times we have been hit. I mentioned an incident from the week before, saying a different player whaled the ball at me on purpose.

Last week I wasn't technically supposed to play because I still had a day to go before my friend nurse Jo took the stitch out of the biopsy on my right thumb. But it was so small that I put a bandaid on it and figured it would be OK.

Three of us were warming up before the fourth arrived. The woman on the other side kept hitting it only to the person next to me. I jumped up and down and said, hit it to me, hit it to me. I was just fooling around, but she backed up, took a big swing, and hit it straight at me.

After a few minutes she apologized and said she doesn't like it when she acts like that. I accepted the apology, but the after effects ruined that set. Most of all it affected my serve. I double faulted more times than I ever have done, and although I was just trying to forget it and get over it, I saw how your emotions can affect your game.

In the other rounds, my mood and playing picked up. People complicated me on my net game, an inheritance from my father, the result of George's lessons, and my height and long arms.

Afterwards she apologized again and we chatted a little about, of all things, our respective dental problems. I wanted to hang around a little so the air could naturally clear because I wasn't upset anymore and didn't want her to be either. She joked that if her ball had made contact and I had lost another tooth (making it 13 gone) it would be something to write about on my blog.

So that's what I did.

 I can think of quite a few when tempers flared. I don't know how men on teams react to stress. Maybe better, maybe worse.

Many of us are our own worst enemy, which in turn makes us worse. It's then that we need to focus on the ball and maybe even reread (or read for the first time) The Inner Game of Tennis.

Sometimes, especially in league play, we forget that we're only playing for the brownies at the end. But the competitiveness is also what keeps us coming back.

Dermatology doubleheader and alphabet soup

A post from a year ago, A Little More Pain Today, came up on Facebook with a photo of me standing right near where I'm sitting at Diane and David's house in Newton waiting for more pain to be inflicted on my face this afternoon.

The funny thing is, I do not remember what it was. They all blur together.

The theme for this week is alphabet soup, ECP and PDT.

Internal sunburn yesterday, external today.

ECP: Extracorporeal photopheresis, what I refer to as the blood therapy or sometimes the blood thing, for my graft vs. host of the skin. I talked to another relatively new (to me) doctor yesterday, our second meeting. Sometimes they don't know what to make of me. I said I had played tennis that morning and over the weekend ran (or whatever you would call it) a 10-K race.

It is so much better with the angio needle. I was even able to get up and go to the bathroom without worry of it infiltrating. A new nurse (who had come over from Mass General) took care of me. He was a character, telling me it was his first time but he would try to do a good job. I don't remember exactly what I said but I gave it back to him.

"Like returning a slice with a slice," I said.

Today, PDT, or photodynamic therapy, to remove precancerous cells and any tiny cancers from my neck and face: "a treatment that uses a drug, called a photosensitizer or photosensitizing agent, and a particular type of light. When photosensitizers are exposed to a specific wavelength of light, they produce a form of oxygen that kills nearby cells."

This hurts a lot. I don't know why people do this sort of thing cosmetically. You hold a tiny blower in your hand and move it around while you feel like you're getting the worst sunburn ever. I can't remember the exact time. Maybe 16 minutes. Maybe I should imagine that it is wind blowing on a beach.

Oh and I might also get a biopsy on a weird spot on my calf. Just as the one on my ankle has healed nicely.

Then back home around four. Nothing much tomorrow because I will be carless. That squeaking sound turned out to be a call for new rear brakes. Better write up a storm to cover that.

In between, a good dinner with Diane last night and upcoming brunch this morning with Rook, who is going to be kind enough to drop me at the dermatologist's office in Brookline.

The procedures will not be fun but it's always nice to see my primary dermatologist, Jennifer Lin, who will weigh in on how she thinks the ECP is going. She's the one who used to talk to me about dating. While freezing spots off my skin. Now she is happily married and a new mother. I assume she will ask about me. I'll have to think about which stories to tell her this time. Or not.

Bad dreams about skin, good night with the Dems

Eight years out. Fewer relapse nightmares.

Graft vs. host disease, mostly of the skin. More dermatological nightmares.

For example, in my dream last night I was going to Florida. Or maybe summer camp. It wasn't clear, but I had to pack for warm weather. When I got there, my first thought was that I didn't want my parents to leave. The second was that I had forgotten my bathing suit.

Some other women (girls?) said no problem, they had extras. So I took one and went into a bathroom and tried it on. It was a two-piece with a top that didn't fit over my stomach, which in real life has popped out due to the GVHD of the skin. (No, it is not the same as normal aging, it is what the doctor described accurately as feeling like a band.)

I thought I would just wear a shirt over it. Everything seemed OK until I looked down and saw some raised spots on my abdomen. I went to a doctor who paged the dermatologist. The doctor said he wasn't sure but he thought the new spots looked ominous. I was seriously distressed.

I woke up in a panic.

Then ...

I gave Maddie her morning hug and went downstairs and had half an orange and opened up the free guided meditation that I have bookmarked and did a 10-minute (well, 9:52 min) calming meditation. Then cereal and off to fun tennis (pills, water and coffee in the car), then Starbucks to discuss the headlines, home to walk the dog and this evening, attending a meeting, "Mobilizing the Democratic Party from the Bottom Up: Using our most strategic political tool to resist Trump and reclaim our democracy," held before the Northampton Democratic City Committee's Caucus.

I rode with neighbors from the South Hadley Democratic Committee. After they explained caucusing to me, it sounded interesting and important enough that I might want to get involved with the local Dems. All in all, I got a boost from the commitment and enthusiasm in the packed auditorium at Smith Vocational High School. The pizza was good too.

The trouble with (some) words

Newton haircut

While taking a little break from blogging (laying low) I did some of these things in a discombobulated way, not in order of occurrence: went to spinning straight from Boston in my street clothes, went to yoga in my tennis clothes, took a fabulous 20-mile bike ride on the Allegheny Rail Trail (part of long weekend in Pittsburgh and Hidden Valley, great friends, great food), naively/insensitively posted on Facebook and tweeted about a complaint I had with a company when I should have sent an email, got slammed, insults flying at me that you would never say to someone's face (fuckwaste of a human being, seriously?), did the wrong things (over engaged, overreacted) when, according to this timely post How to Deal With Twitter Drama, I maybe could have engaged for a little while but then should have walked away as the stress level climbed and I even cried; then, following advice of a son who said to think about why I'm tweeting (to promote myself as a writer and comment on the things that interest me, also, cute dog stuff allowed) — and who suggested going back and deleting all the threads of the conversation — went back and cleaned the slate, took a break, and restarted and rebalanced by sending positive vibes to the universe, complimenting other writers or liking and retweeting good advice and thoughts and Democratic points of view.

Since that might have been the longest sentence I ever wrote, time to start another. Gave the pep talk to another Dana-Farber patient who relapsed after bone marrow transplant (connection through the One-to-One program in which those of us who've been there help out those going through it), and she said she felt a lot better.  I said, as I said to previous patients, that I don't know if I should tell her every crazy thing that happened to me because I don't want her to get it in her mind that the same could happen to her, but that I would tell her if she wanted to know, to point out that I'm fine, going on eight years, and she said yes, please tell, because she needed to hear about a good outcome despite twists and turns. I told her what my nurse Vytas (who I miss so much), always said when he sat on my bed and called me Nervous Nellie: "They'll figure it out."

I sent some reading material, including Complex Case Study: Four Stem Cell Transplants for Acute Myeloid Leukemia (AML), in which my Dana-Farber caregivers explain the whole thing from its start in 2003. She asked if she could call and I said of course.

Interspersed with all of this, I managed to go to ECP, get a Newton haircut, go out to dinner with friends and see a great play at The New Century Theater in Northampton, play tennis at the Canoe Club before it rained, walk the dog, and watch Wimbledon, including the tremendous women's final.

Some other thoughts on parsing sentences and phrases: As previously noted, my skin condition backtracked after I extended the time between ECP sessions to three weeks instead of two. I quickly returned to two, but my skin has not bounced back to where it was. I showed Ellen, the PA, how the skin on my abdomen had hardened again (a result of the graft vs. host disease of the skin)  and she said she thought it might be something internal because my skin is OK.

"It's nothing to worry about...for now," she said.

"For now?" I asked. "What does that mean?"

She said it's just something they say.

I repeated this to the two nurses taking care of me and asked, "Does she think I have ovarian cancer?"
They both said to forget about it, it is common for your skin to take a while to soften up after backsliding. One of them said that the PA's modifier was like saying, "Your house is not going to burn down...for now," "That bus is not going to hit you for now," and, adding some more to make me laugh, concluded it was just a case of CYA (Cover Your Ass). Hello healthcare providers: This is not helpful.

Then there were the words the hairdresser told me upon parting, when upon the recommendation of a friend, I got a Newton haircut. I asked what he was going to do, and he said, "Give you the best haircut you ever had." It was a great haircut (twice the price of Western Mass, though), but he said a kind of odd thing, telling me that from looking at me he knew every bone in my body, which is why he can give a good haircut, and at the end of our visit saying, "I sense a lot of fear."

Say WHAT?

These things are the reason that when driving home Thursday and realizing I didn't have time to go home and change for spinning, I went straight to the Y in my street clothes. Luckily I had my biking shoes in the car.

It was so humid that the fitness class was canceled, but while sweating like crazy, I felt my brain calm down.

At night, another strange thing happened.

I heard a crash in the hall outside my room, but, half asleep,  I didn't get up to investigate. I thought maybe a robber was out there and wished Maddie was a barker. Then I decided it was just a house sound and drifted back to sleep.

In the morning, on the wall where an antique mirror in a wood frame used to be, there was only a piece of wood hanging from a wire. I looked all over and couldn't find the mirror. OK, I thought, so someone had come in and stolen the mirror. Then I saw it face down on the other side of the room. As I went to get it, I said, please don't let the mirror be broken, because then I would have worried that I was going to have seven years of bad luck.

Thankfully it was all in one piece so I had one less strange thing to worry about.

That blood thing that I have been getting

When one of my friends approached me at our fun gathering last night and said she had a complaint about my blog, I thought I had done something wrong along the lines of libeling someone, maybe one of those crazy drivers.

But it turns out she had a constructive criticism: While sometimes I remember to link to the explanation of a medical procedure, such as the photopheresis, or ECP, that I have been getting at Dana-Farber since May, I also sometimes write the post quickly and neglect to do it. This website provides a good explanation:

Light treatment (ECP)

This is also known as extracorporeal photopheresis or light therapy. Photopheresis can improve skin, liver and mouth GVHD. 

Doctors normally give photopheresis after other treatment hasn’t worked or has stopped working. Photopheresis is a complicated process and it may take up to 6 months before you see any real improvement in symptoms.

To have the treatment your nurse will connect you to a machine by a drip. Your blood then goes through the machine, which separates off some of your white blood cells. You then have your blood, minus the white blood cells, given back into your vein. The separated white blood cells are treated with a special drug and then exposed to ultraviolet light. This light activates the drug so that it is able to destroy the abnormal white blood cells. After this process your nurse gives back the treated white blood cells into your vein.

Each treatment takes between 3 and 4 hours. Having this procedure does not hurt, but some people may feel a bit weak or dizzy during or after the treatment. After the treatment your skin and eyes may be more sensitive to sunlight for about 24 hours, so you need to protect yourself from the sun and wear sunglasses.

The Kraft Blood Donor Center (where I get the procedure done) is technically at Brigham and Women's Hospital, but I usually say Dana-Farber because I come through that building and it is halfway down the corridor connecting the two. Ellen, the PA, was not happy with all of the outdoor tennis I played this summer, and neither was Dr. Alyea, but I applied a ton of sunscreen, and, even on the hottest days, sometimes wore long sleeves. 

In the department of "learning more than I never wanted to know," I learned the the procedure was originally developed to give lymphoma patients radiation only to their blood without having to do it to their whole body, and then some genius researcher realized it works for graft vs. host disease of the skin. If you click on the link, you can read about how GVHD is a common side effect of an allogenic bone marrow transplant (a transplant using a donor's stem cells). It caused areas of my skin the thicken and harden, and my hands to swell, constricting my movement in a way that I did not totally realize until the procedure began to work, meaning the swelling went away and my skin softened, with the net benefit of helping me move better on the tennis court!

I hope to cut back in the near future to every other week. For some four months, I have been going every week, and for the three months before, twice a week. You don't get to ever totally stop because if you don't get the procedure periodically, the problem is likely to return.

During the times when I was dehydrated from diarrhea or from extreme sweating over the summer, my veins flattened out and they had trouble getting the big needle in. A few times I even got fluids before. I am going today and I hope I do OK in light of two factors that might cause some dehydration: the wine that I drank last night at our dinner, and the coffee that I plan to drink today at the tennis tea following the round robin.

I'll have to drink a lot (of water) on the way to Boston. I was going to drive myself straight from Longmeadow, but I decided to only spend a short time at the tea so I can come back and get a ride. Fingers crossed that the ride will be non eventful.

From not answering the phone to oversharing on the phone

What's worse than a crazy driver?

No driver at all!

What's worse than no driver?

Waiting for more than an hour, to no avail, for someone at MART to pick up so I could find out what happened and try to book a ride for today, while Hannah Kitzmiller, the resource specialist at Dana-Farber, also holds for more than hour, then realizing I better gas up and drive myself, which I do in the pouring rain, and then driving back in the dark in the rain and fog, an eight-hour day all together.

MART is worse than Comcast, and that is saying a lot. The only way you can get through is to put your phone on speaker and carry it around with you in your house for more than an hour. Maybe even two. The recorded voice tells you that you can leave a message on the website. Which does not work.

Well, we all know that it could be worse. I realize this especially as I sit in my warm house eating broccoli and ravioli, relaxing with a smidgen of Ativan. Also I think my mother sent me a sign when I was standing with wet feet, pumping gas, and looked down to see a quarter in the dirt.

I got a high-test Starbucks and made it almost all the way to Boston without getting sleepy, stopping in Framingham for a pick-me-up of peanut M&Ms.

I got there early because I thought I had a 2 p.m. appointment with Dr. Goguen (to check on my tongue), when really she had canceled and changed the appointment to January. It is hard to keep track of her. This is the second time she rebooked. I thought I was very resourceful putting a reminder in my phone for the 2 p.m. today, which I almost forgot until I got the reminder yesterday. But I had forgotten to remove it. That part worked out well because I was able to get into ECP early. Still, I wasn't done until 6. And that was with only five cycles. I'm glad I was allowed to cut it back from six cycles.

I told Ellen, the PA, that Melissa had said I could start going every other week starting in January. Ellen thought that was a good idea. We would do that for three months and then cut back some more. After that, I would space out some more. But I will never totally stop. It I did, the Graft vs. Host of the skin is likely to come back.

While I was lying there getting my blood removed, a woman who I think was a resident spoke loudly on the phone about a patient. I found this disturbing and unprofessional. She was talking about a patient who sounded a lot like I had been. Platelets as low as two, bumped up to 40 after a transfusion, responding just to HLA matched platelets, in some kind of difficulty. The woman said she had had a disagreement with Dr. Antin and realized afterwards that it was a bad idea because Dr. Antin always needs to be right although she still disagreed with him. (She was referring to Joseph Antin, chief and program director of stem cell transplantation, who was my friend Patricia's doctor.)

Rather than looking at me, she looked through me. Meanwhile, I had received a call from a friend and said I didn't want to talk too long because I was in a big open space and didn't want to disturb anyone. Signs in the elevators warn against talking about patients. And here was this employee discussing a patient out in the open.

It sounded so much like me that I told my nurse that I had been that low and had been saved by an anonymous donor when I needed platelets before they could insert an catheter in my neck to begin dialysis when I was in kidney failure.

With that story fresh in my mind, I went over to the donor side as I sometimes do, to tell the story and thank the donors. I spoke to one woman who, "It's my pleasure." The donors and the nurses seem to like seeing someone like me who would not be alive if not for their generosity, and I like to go over and thank them. I wish I knew that one particular donor who saved my life.

Annoyed

I had almost forgotten about the biopsy that I had on the tiny spot on my forehead, so when my dermatologist, Dr. Lieu,  called today to say it was another squamous cell I was a little surprised.

It's the usual – in situ – or on the skin, but still I need to apply a chemotherapy cream to it for a few weeks.

Our conversation about some swelling and stiffness in my left hand was more disconcerting. I have had trouble flattening out that hand for a while and thought I might be developing arthritis. I am going to bring this up with my internist when I see him Monday. But lately I have noticed swelling also. I brought this up with Dr. Lieu by way of wondering if this is related to the GVHD on other areas of my skin. She said yes it is more likely that and less likely arthritis and that I should probably come in before my next scheduled appointment.

I don't mind not doing the perfect down dog but I would rather that hand not curl up on me since I need it for writing.

I might have to increase my prednisone dose, which of course is not the way I want to go. Another possibility previously mentioned is ECP, or Extracorporeal photopheresis. I found this definition on the website of the National Institutes of Health: ECP is a cell-based immunomodulatory therapy that involves collecting leukocytes from peripheral blood. These cells are exposed to a photosensitizing agent, 8-methoxypsoralen, and are then treated with ultraviolet (uv) radiation, after which they are re-infused. 

This would require twice a week for a ridiculous amount of time. Plus Boston might be the only place it could be done. She will talk to Melissa and they will see if they can arrive at some alternatives.