Wednesday, August 14, 2019

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. 29th.

Me with "bangs"
Today I looked in Patient Gateway and saw that I was scheduled for Aug. 22nd, 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.


Monday, August 5, 2019

When the worst part is the healing

Not a pretty profile
Ellen, the physician assistant at ECP (the light therapy), said that my Mohs surgery for invasive squamous cell carcinoma was on a small area and would be no big deal. All things considered, it is definitely no big deal, but for the week in which it is healing, it is.

For a small spot that was barely visible (the resident called the BF into the exam room to make sure they had the right spot), it must have gone relatively deep. It only needed one "pass," but it required internal stitches and a running stitch with maybe eight loops. 

Though my blood pressure was a little high, I wasn't worried about the procedure itself. Dr. Schmultz, at the Mohs surgery center at Brigham and Women's Faulkner Hospital, in Jamaica Plain, does such a good job of giving the anesthesia that you barely feel it. Also it was quick, and we chatted for most of it about such relevant topics as making sure I was taking niacinamide (same as nicotinamide) which has been shown in studies to cut down on skin cancer risk. I asked about a product, Tru Niagen, which has the same active ingredient and a big anti-aging marketing campaign. She said it was all the same and she wondered how long it would take for someone to make money off of it.

The anesthesia had worn off by the time we got home. It started to ache. As directed, I took 10 mgs. of oxycodone. It helped with the pain but it affects my sleep. You would think it would knock a person out, but it puts me in a strange state. I took a sliver of Ativan. I tried to read but couldn't focus. I doubt that I got much sleep.

Since then it has hurt on and off. I don't remember the other healing processes being as uncomfortable. Maybe I just forgot. Maybe it really is more uncomfortable due to positioning which causes the area to stretch every time I move my head. I haven't played tennis or run and have just been walking. Yesterday and today I went to yoga because I felt like I needed more. My mental state is not great. The other night, when I washed it and applied Vaseline and a new Bandaid, I must have activated something because it itched so much I thought I would never get to sleep unless I took a Benadryl. I took the Benadryl and woke up hung over. I'm looking forward to tomorrow, when I get the stitches out.

Here's a little something I wrote about having four stem cell transplants. I figure I've had more pain in my life than the one I'm having in this healing process. Still, the pain you have at the moment is the one that hurts and it doesn't make it much easier to think about times that were worse. 

Monday, July 29, 2019

Adoring a photo, annoyed about my skin




Diane, Callen, and Joe at the dock
I love this photo. I think I should get it framed. It is better than a posed photo. If I feel down, the delight in Diane's and Joe's faces will make me smile. The delicious feel of those tiny, soft hands. And of course the dock in Wellfleet. Everyone agrees the extra hour to get there is worth it. The playground nearby. P-L-A-Y-G-R-O-U-N-D. Spelled out in case it wasn't going to happen.

Back to reality, I got the results of the visual field test that I thought my left eye had failed.

I passed the test after all. It goes to show you something. I’m not exactly sure what it is. Well, actually, I do know but I’m not sure how to fix it because it might be a personality trait. The tendency to catastrophize. The doctor was super nice. She said that the experience of taking the test is subjective. Some people hate it. Some think they failed but they didn’t. Some don’t mind.

She said I had very nice tears. I didn't know whether to thank her or not. It reminds me of not knowing whether I should say thank you when I was bald and people said my head had a very nice shape. I'm pretty sure I said thank you to be polite, but I didn't have anything to do about it.

Tomorrow I get another Mohs surgery. It is on a tiny spot on my neck. The larger darker one that I feared was melanoma because it looked different was really “just” a squamous cell on the skin. The one on my neck is invasive, but, again, invasive in the skin, not into my body.

The dermatologist showed me an enlarged photo of my neck and pointed to the spot. I nearly fell off the table. “That’s how my neck looks???” I said, or maybe I just gasped. If polka dotted necks were in, I would win a prize. I think I'll go re-read Nora Ephron’s “I Feel Bad About My Neck.”

I used to be more concerned about the procedure. Now I’m mostly annoyed about missing tennis. I’m going to squeeze in one more day, tomorrow morning, at the Canoe Club. Then my nice chauffeur is going to drive me to Boston, which is twice in two weeks because last week I went to see one of my dermatologists, followed by a few hours at the place where everybody knows my name, the Kraft Family Blood Donor Center, where I get the light treatment on my blood.

The consensus is to try to go every three weeks instead of every other week because I seem to have reached a plateau. I’m stuck with the lumps and bumps and the “band” along my abdomen but Dr. Liu (Stephanie) is pleased because you can pinch the skin on my thighs (yahoo!) whereas when this problem (graft vs. host of the skin) started, my thighs were rock hard. You might want that for your abs but not for the rest of your skin. If we hadn't taken action, I might have ended up with a new problem: scleroderma, or hardening of the skin. And that would not have been good for my tennis game.


Saturday, July 20, 2019

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.

Thursday, July 4, 2019

Wanted: someone to remove stitch and find watch

The craziest thing that has happened in a while is that a gremlin took my watch a day after I took a photo of it on my way home from ECP. That's extracorporeal photopheresis, the light therapy for graft vs. host disease of the skin, and one of these days I'll have to explain it again because I haven't done it in a while.  I took the photo to show my watchmaker friend Bev how the lavender  complimented my wraps, and that must have been the act that caused the jinx. (The bandaid is from a biopsied spot.)

I have tried to trace my movements and have looked in all the corners but it is nowhere to be found. A friend said it would help to turn a glass upside down on the counter. (No luck.) When I lost a bag of scarves, a friend prayed to Saint Anthony for me. But I never found the scarves, so I don't think it worked. I was really attached to that watch. I thought there was magic in the way it changed colors in different circumstances. That feeling when you just can't remember where something i
Has anybody seen my watch?
s is very disconcerting

If you do a search beginning with "is losing things a sign of," it fills in dementia, Alzheimer's, ADHD and depression. 

"Misplacing things often happens in everyone’s life, but when it is consistent and you cannot formulate a plan to to retrace your steps, it is a problem worth looking into more carefully," according to The Cleveland Clinic. I can't retrace my steps, or else I would find it, but no, I don't actually think I have Alzheimer's.

I'm wearing a green one until Bev makes me a new lavender one. What can I say, the replacement and the old one still cost a fraction of an Apple Watch.

What I really have is a problem with a stitch that I got in the first of two Boston visits last week, when I went on Tuesday for a spot check and Thursday for ECP.  I had called to try to get the two in one day, but the scheduler did not get the message. Well, the stitch is the immediate problem but I also learned that I need another Mohs surgery on another squamous cell cancer, this time a tiny spot on the back of my jaw. A spot on my wrist that concerned me to the point I thought it was melanoma turned out to be a squamous cell on the skin, as did the spot on my face. I need to apply Efudex, the chemotherapy cream, for three weeks. 

The one I didn't even know existed turned out to be the one that goes deeper. 

But back to the stitch. I thought it odd that when I left, the nurse didn't mention it. So I followed past procedure and called my friend, Nurse Jo, who lives down the street and removes stitches if there are not too many. I picked her some flowers. She met me in my driveway and asked where the suture removal kit was. I said I thought SHE had it. She said she used up all the ones she had – on me – and we agreed I would call the doctor about it. At least we got to chat for a few minutes.

Kathleen, one nurse, told me one thing, followed up by Kathy, who told me something else.

Similar-sounding names can lead to confusion. There’s Kathleen, the nurse for Dr. Liu, and Kathy, the nurse for Dr. Lin.

I had been talking to Kathleen about an upcoming appointment with Dr. Liu when she saw an unusual occurrence, and opening with Dr. Lin.  So she gave me the appointment. I was going to drive myself, but I took J up on the offer to drive me, and it's a good thing I did. I didn't expect to have three spots biopsied and get multiple spots frozen. She said I would get fewer skin cancers if I stopped doing my outdoor activities, but she knows they're important for my mental health, so she wouldn't tell me to stop. I protect so much of my skin that the only thing left would seem to be to get a mask for my face and a scarf for my neck.

A few days ago I called Kathleen about the stitch. She said anyone could take it out. I asked about the biopsy results, and she said Dr. Lin went on vacation and would get back to me when she came back but I should feel pretty good because if it was something serious, then she would have called me.

A day later, Kathy called and said the spot on my jaw is invasive and needs surgery. 

I know the difference between invasive on the skin and invasive inside my body, but I ask each time. I like to make sure, and hearing it again is reassuring.

Ann, my blogger friend, died from squamous cell cancer that had spread from her tongue to her organs. It is a different kind of invasive.

Meanwhile, the issue of the stitch is still unresolved.

Yesterday after my session at Amherst Community Acupuncture, my acupuncturist said she could try to snip it out. We sat by the window and she went after it with a scissors. She said she thought she got it all. 

Actually, she didn't. Two little bristly threads are sticking out from my cheek. I don't think stitch removal is in the boyfriend description, and I don't want to go all the way to Springfield for a doctor's appointment. Friends suggested the CVS Minute Clinic. I think that tomorrow, that's the way I'll go.

Yesterday I got a call about scheduling the Mohs, the procedure in which a surgeon removes a skin cancer a layer at a time until all the margins are clear. What I like least about it is that it keeps me off the tennis courts for a few weeks. The needles going in for the anesthesia come in second place in the dislikable department, but the doctor does such a good job that it isn't as bad as I thought it would be when I had my first one.

Odd that a leukemia blog ends up being more about skin cancer.

Thursday, June 27, 2019

Running around running two businesses


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Sometimes it feels like I have two jobs, the business of running my medical care and of running my so-called freelance writing business. An example of this is how the other day played out, when I wanted to write but couldn't fit it in.

I am concerned that a spot on my wrist could be skin cancer. As per a nurse’s instructions, I sent a photo of it to one of my dermatologists, Dr. Liu, on Patient Gateway, the Partners portal, but the photo is useless because it rejects the larger size and when you make it smaller, it is pixilated and therefore of no use.

Dr. Liu said she would look at it when I see her at the end of July. I called her scheduler to see if there were any earlier openings and she said there was a rare occurrence! An opening with Dr. Lin at 11:15 yesterday at 221 Longwood in Boston.

This led to a domino effect of canceling the occupational therapy appointment I had for 2 p.m. I will have to do my hand exercises because she measures my progress on opening up my hand more, specifically my left one which was starting to look like a claw, due to tightening of the fascia resulting from graft vs. host of the skin. The ECP is helping in other areas by loosening up my skin but not in my hands.

Then on to calling in prescriptions. I just call the pharmacy and speak to the recorded creepy voice except for one doctor who says the automated refill requests go to another office so I have to call to make sure she gets it.

Next it was time for visual field testing at the ophthalmologist’s. This is nerve-wracking. You have to push a button every time you see a flashing light. They are testing for possible glaucoma and loss of peripheral vision. My mother had it so I’m at risk. I did it last year and was OK. The technicians were cranky. I was tired.

“OPEN YOUR EYES WIDER!” they said. “DON’T LOOK TO THE SIDE, JUST FOCUS ON THE DOT.” They did the right eye twice because the machine wasn’t working the first time. By the time they got to the left eye I was so tired that I wasn’t catching the dots.

I’m afraid that when I see the doctor, she’s going to tell me that I failed on the left side.

I tried to change today’s ECP so I would not have to go twice in one week. I didn’t get a return call or email. I’m going back for the procedure today.

I’m having trouble getting Maddie into the car and might have to get a dog ramp.

I took an extra gabapentin because I take less than the therapeutic amount, due to the side effects. Nobody wants to take more but I wanted to see if it helps the neuropathy because the CBD isn’t doing it. I’ve heard I could take more CBD, but nobody knows. Before tennis on Monday, I took an extra gabapentin and had one gummy that is 1 to 1, CBD to THC. It is just a tiny bit of THC but it was bad for my tennis. My arm was wobbly and I wasn’t making my usual net shots. I think I should stick to THC at night. In any case, either I warmed up or the THC wore off, because by the third rotation I was doing fine.

I guess I could have skipped tennis to get some writing done, but as exercise is part of my health care routine, I wasn’t going to do it. In summary I seemed to spend most of the day planning and scheduling and rescheduling appointments, and not any time writing. It is necessary but not satisfying. All I can say is we transplant recipients sure need a lot of maintenance and sometimes it’s hard to get other things done, in general.