Mass confusion on the scheduling and dermatology front

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I thought I had two good things to report on the medical front but it turns out there is only one: I felt better as soon as I got my stitches out of my neck last week. I was free to go to tennis and do yoga without worrying about straining my neck, and I was pain free. Yay!

 The other – which would make a big deal in my life and give a break to my veins – was supposed to be switching to every three weeks, instead of two, for the trip to Dana-Farber for ECP, aka extracorporealphotopheresis for graft vs. host of the skin, aka the light therapy, aka the internal sunburn, for softening up my tightened skin. When I went last week, the Young Doctor, aka the resident whose name I forget, said since everyone had been talking for so long about switching to three weeks, why don’t we go ahead and do it. I said OK. She said she would have the scheduler put me down for Aug. 29^th.

Me with "bangs"

Today I looked in Patient Gateway and saw that I was scheduled for Aug. 22^nd, which is two weeks. It takes a lot of energy to keep on top of these things. Last time they had it wrong too, unless they changed it on purpose without telling me. Instead of scheduling me for two weeks from the previous time, they scheduled me for three, then went back to two. I wondered if they had switched me to three without telling me but then I wondered why it had popped me back to two.

I’m also trying to coordinate a checkup with Melissa with the ECP days. So this matters. As I’m trying to write and/or pitch some freelance stories, I’m distracted by this confusion. I wrote her that maybe they were just trying to test my mental facilities to see if I caught the mistakes. There should be a better way. I think the name of my old tennis team, Mass Confusion, could apply to some of this stuff.

On the dermatology side, the Mohs surgeon told me to apply a combination of creams all over my face, to treat a couple of squamous cell cancers in situ (on the skin) and head off other ones. It is Efudex and Calcipotriene , which someone online summarized as giving the Efudex superpowers. It caused a side effect of a fungus on and around my  lips. They burned like crazy. When I went to get the stitches out, my internist gave me a cream that made the fungus go away. I called my primary dermatologist to ask if I should still apply the cream combination. I left a message but didn’t get a return call. I stopped applying the cream combo. I guess if I want a definitive answer I’ll have to call the office again or email my dermatologist.

At tennis today, after I had put my pill box down on the table (because I had taken some pills on the way over) George asked how many pills I took a day. I guess I could count. I think it’s maybe 25. I said somebody called me a chemistry experiment. 

Also in between things today I had fun texting with Katie about maybe getting bangs. I took some hair from the bottom of my hair and put it over my forehead to show the effect of bangs. Maybe Katie and I will do it together. Also on the so-called beauty front, remind me to never get another gel manicure. It totally wrecked my nails. I did it for one of the two spring weddings I attended and thought it would be OK, but a few of my nails split in two and broke down below the nail line. I’ve been told it might take at least six months for them to recover. When I showed them to my dermatologist at the last visit, she said another reason not to do it is that you’re getting UV radiation when they bake the color on. I hadn’t thought of it but now I’m aware. 

My medical people have remarked on how strong my nails remained throughout everything I’ve been through. Leukemia didn’t ruin them, but a visit to Lucky Nails in Northampton did. That will teach me to be a walk in. If I had read the reviews, I wouldn't have gone. Well it is kind of weirdly funny to get unlucky after a visit to Lucky Nails so maybe I can laugh about it and after all they will grow back. I thought of going in and showing them what happened but what are they going to do? Give me my $25 back? Actually I think I paid an extra $5 for the gel. BTW it was my second and last time.

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.

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.

How to not fall off a bike, and other observations

Friend watches me read outside Airbnb, Wellfleet

I took a little break, this time on another getaway, not as exotic as Costa Rica, but beautiful, and according to a friend who has traveled around the world, one of the most exotic places he's seen.

He was referring to Race Point, in Provincetown, and the bike ride we took through the dunes. Savoring the spring blooms still out, the beach flowers fragrant, the distinctive smell of the sea...we stayed for a while after finishing the loop. (Detouring here: Did you ever wonder how to describe that ocean smell? I looked it up and found that from poets to biologists, people had plenty to say. Why does the sea smell like the sea?, from Popular Science, takes the romance out of it but is an interesting read.)

I'd only been biking a little, and for some reason, though I went to a lot of spinning classes at the Y last year, it didn't speak to me this year. I do something most every day, so I think I filled those slots with yoga and a little more tennis because I joined an extra group.

(Tennis detour: I'm more relaxed as a "fun" player and during my outdoor summer league season with the Holyoke Dolls than in the regular leagues.  My record is pretty good with the Dolls and not so good anymore during indoor league tennis. Yesterday I played twice, first with my Monday morning group, and last night at Forest Park for the team. I was worried that I would be tired, but despite the heat and humidity, I was energized and played really well, getting balls out of range, I think  surprising the other players and also surprising myself. My excellent, fun, partner and I were a good team; I set some up and she smashed them. It was very convivial, more so than indoors, with chit chat on the side changes and laughter between two courts. We won, 6-1, 6-3. I wish this and other summer scores counted in my rating; scores in this league don't count. But, rating, shmating, it's like a test score that might not reflect what you do. I kind of understand why I didn't get asked to play this year on a senior team for which I didn't earn a win, but still, despite the "maturity" of advancing age, it's hard to always separate self-worth from tennis-worth. That's why last night was great, and it's also great that George says I'm playing my best tennis ever. It must have something to do with the light therapy on my blood, the extracorporeal photopheresis, although to be honest I can't exactly explain it except for saying it's loosened up my skin and made me more flexible.)

Therefore if I had fallen off my bike tottering in granny gear going up one of the Race Point hills, I might have had a better fall than my past crashes. But maturity overcame my desire to prove a point  when I was going so slowly up a steep hill that I could have lost my balance and fallen off. I GOT off and walked to the top, congratulating myself on knowing when I had reached a limit. I can't think of other times when I've gotten off; I didn't love doing it, but it was better than falling.

Another unusual thing for me was talking to a cat. That's Fiddle, the dog-like cat who hangs out at the sweet Airbnb where we stayed in Wellfleet, a short walk to town. Besides my cousin's (late) cat, Chloe, she's the only dog-like cat I ever knew. She sat with me when I read. I didn't do much reading, though, because I was either doing some work or doing outdoor activities with the friend who wishes to remain anonymous. Highlights included a hike around Great Island and walks along the beach and a last-day bike ride starting on the bike path in Wellfleet and then turning left for a ride to Coast Guard Beach.

We watched a couple playing with their grandson on the beach. It made me wonder how I can be a grandmother now, while, just the other day, I was in high school, riding around these beaches in a jeep with that first love who creeps into my thoughts in places that are connected to him. The beach can do that to you. I'm pretty sure that when we walked along the beach separately, me walking through the shallow water and him on the harder sand, that he was having his own thoughts too.

Entrance to Coast Guard Beach, Eastham

When we were exiting up the path, the grandpa was walking down with the lunch that he had gotten out of the car. I asked (jokingly) if we could have some. We got to doing the "where are you from" thing. He said he lives in Munson. I said I used to work for the newspaper (The Republican) that covered that area. He asked if I knew Jim Gillen. I said of course! He was an editor at the paper. The grandpa (Andre, I think, said he is a lifelong friend of Jim's and was staying in Jim's Cape house. He asked if he could take my photo and text it to Jim. I said of course; when he sent it I wrote a cutline saying "could I please have an extra inch?" That's how it used to go at the paper, with space getting smaller and reporters begging for more space.

It was the last week before the crowds arrive. The bike path can get crazy in season, but we had it almost to ourselves. It made me more relaxed because my concern on crowded bike paths is not so much falling, as it would be on a hill on the road, but bumping into kids or having kids bump into me.

I'm looking forward to going back in a couple of weeks, this time to Diane and David's, with my three (plus one grandchild). It took a lot of engineering to try to get everyone together, but I think that, with different cars, we'll manage at least one dinner and part of a day together. A friend took everyone on a cruise to accomplish a similar feat, but I'm not quite up that.

Not enough room on patient history form

I would have a week off from Boston if not for my consultation tomorrow at the Mohs and Dermatologic Surgery Center at Faulkner Hospital. I could have tried a back-to-back with ECP next week, but I wanted to take the first available, which is tomorrow.

Oddly, the squamous cell cancer on my jawline – the one that is the subject of the consult – has, at least on the surface, disappeared. Ellen, the physician's assistant at the Kraft Blood Donor Center, said she doubts that it will require surgery. But she doesn't like a flaky raised spot on the other side of my face and suspects that it may need to biopsied. (Thought process: Another biopsy would mean no tennis for the week. Funny that I'm more worried about missing exercise than I am about needles in my face.)

In filling out the patient history form, I had quite the conversation with myself.

For example, under the category "Emotional," they want to know if you have suffered from depression or anxiety attacks. I say to myself, "Wouldn't you, if you had my history"? Do I have anxiety attacks when I think that my fatigue is due to relapse or that each new suspicious spot is a melanoma? Am I sometimes depressed about what happened?" I check "No," because I am not currently suffering from these things. I erase and check "Yes," because I sometimes do.

Then, they want you to describe body location and month/year treated, and diagnosis for every non-melanoma skin cancer.

I write on one line: lip, neck, wrist, tear duct, all squamous cell cancers, treated with Mohs by Dr. Neel at Mass General, don't know the dates.

For the category Blood/hematologic, I don't know if I should check no problem or check anemia (low red blood cell count) and low white blood cell count. Do they mean now, in which case it would be no problem, or do they mean ever, for example when my red blood cell count was so low I needed transfusions and my white count was rock bottom when I had neutropenia  after chemotherapy? I go for checking the yes boxes.

You have ONE LINE to write if you have had cancer other than skin cancer. That is a challenge. I write, Leukemia, BMTs preceded by chemo, 2003, 2007 (2), 2008. (Sounds awfully close to BLTs, but I'm confident they will figure out my shorthand.)

Good news on the transportation front: This past week, I did not get that horrible Westfield Transport. I will never get the again.

My driver from a different service said that they were shut down. Apparently I wasn't the only one complaining.

As I write about my medical history, I realize I am violating one of the rules of news writing: Avoid alphabet soup. This is the use of too many acronyms.

My health forms, and my posts, are laden with them.

ECP (Extracorporeal photopheresis)
BMT (Bone Marrow Transplant)
PDT (Photodynamic Therapy, the thing when my dermatologist burns the skin off my face, like she will do again in April)
VATS (Video Assisted Thoracic Surgery, the time when they removed the aspergillus fungus from my lung in 2003 before my first transplant.

And, my own contribution:

DALOS (Definitely A Lot of Stuff)