Birthday and beach day good, foot pain bad

I had a great pre birthday, birthday and post birthday followed by a bad foot day. The bad day turned into more. Something re-activated the dreaded plantar fasciitis, making me a bore to anyone who hasn't suffered from it. One of my tennis buddies had it so badly that she had to skip tennis for a while and go to physical therapy. In between games on the court, she showed me some of her stretches. I feel like I know them all...I actually threw out my boot because I was done with it. The moral might be that even if you have a dumpster in your driveway, never throw anything out.

I have been going to the chiropractor and have contacted my orthotics guy, Ken Holt, because I wonder if it's just a matter of getting new orthotics.

A friend said he couldn't keep track of my birthdays, and I understood. One original birthday and four re-birthdays. 

It was great to have the three kids and one cute little boy at my house for the pre-birthday. We ate outside and were going to stay outside (because, COVID) but Callen wanted to go in. We thought of not doing it but all of a sudden we were all inside. We spaced out and that was a while ago already so I figure it was OK. I loved seeing him at my mother's piano next to one of her paintings.

On the real birthday, I played tennis and went out to eat with Boyfriend, for the first time. People said that 30Boltwood, in Amherst, does a good job, and they were right. 

A couple of days later, I got to go back to the Fairfield Beach Club, where I had great success in getting Callen's little shoes on him while Ben was busy with Nell. Callen had eaten a Spiderman pop and got more on himself than in his mouth. I suggested we go wash up. He took my hand and we headed off. That little hand in mine was worth the two-hour drive. I thought we were going to a certain bathroom but he led me to another room with a big sink in it. I picked him up and turned on the water, which he seemed to be trying to catch in his hands. 

This of course makes me think of doing the same thing with my little kids.

At the end of the day I enjoyed a swim in the calm Long Island Sound. I miss seeing the ocean at Cape Cod, but I think it was Katie who pointed out to me that since I'm not allowed in the ocean, this is a good fit for me. Ben pointed out that there were also no sharks.

If you don't care about feet, you can stop here.

 On top of that, my neuropathy, which has been pretty tame, has gone on and off crazy. The other night, I felt like my feet were electrified. I don't post too much in FB groups such as Our Neuropathy Friends, because everyone is going to have a different opinion. But if a lot of people have the same opinion, for example on a kind of CBD that is effective, I might be interested. That group is recognized by The Foundation for Peripheral Neuropathy, by the way, 

Hello! I haven't posted in a while because I've been doing OK, meaning, a low buzz in my feet but not that bad. 900 mgs of gabapentin twice a day, or an extra 300 if I want. I don't know what happened. Maybe it's the rain that is coming. My feet got totally electrified, on top of a return of plantar fasciitis. A while back I tried CBD, THC and a combination and was never that happy with the results so I stopped. I was just staring at some chocolate that is 1-1 and wondering if I should take a nibble but I didn't. CBD doesn't really do anything and THC makes me a little stoned, even if I take a little/ I guess it works to take your mind off the neuropathy but I've kind of been there done that with that feeling. As you all know it is very upsetting. I took 5 mgs of oxycodone before. Now it has worn off. Ibuprofen has a bad effect on my kidneys and Tylenol of course is bad for the liver. I put CBD cream on my feet and that helps a little. I guess my question is whether people have had good luck with CBD. The kind I have now is made by Good Body Products in Vermont, for what that's worth.

Mostly it was good to get a little support.

"People that dont deal with this problem have no idea of how debilitating and relentless it is," one said.

Mostly they are doing the same as I am, rubbing different things in their feet. One said he had it so bad that he had to stop work and apply for Social Security Disability.

Someone said capsaicin in a gel, but I put that on my toe once when I had problems and it burned my skin. 

But then after a string of bad foot days I had one of my best tennis days ever. So in conclusion it's hard to figure.

Mishaps in the house, more messes on my skin

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New sleeping quarters

My squamous cell radar, like my New York parking radar, continues to point me to the right spot.

Which is to say that after I realized that squamous cell cancers in my case at least are areas that won’t stop flaking, I’ve recognized the difference between dry skin and something suspicious. Unconsciously while I was writing (or pondering), I rubbed my finger along an area at the top of my cheekbone near my ear – the sideburn area – and came away with blood. This was a while ago. I forgot about it and then did it again more recently and realized I was picking at some spots that were flaking.

I also felt something scaly behind my head, at the bottom of my hairline.

This happened a few months ago and so I made a dermatology appointment in Boston. Dermatology appointments are not the easiest to get. I went Monday and sure enough ended up with four biopsies. Three for the little cluster near my ear and one down at the back of my head. I assume that I will end up with at least one Mohs. Which means missing a couple of weeks of tennis, sigh.

The after visit summary sounds sort of creepy:

• Neoplasm of uncertain behavior of skin
• Seborrheic dermatitis
• Actinic keratosis
• Personal history of other malignant neoplasm of skin

Actually a skin neoplasm is just an unusual growth that could be cancerous but also noncancerous.  Those stupid actinic keratosis are red spots that have reappeared on my hands and arms. They could be precancerous. I’m supposed to retreat them with a chemo cream combination. I feel like I already did that. Because I did, several times. You are supposed to wrap your hands up in Saran Wrap or some other but I told the doc that was very hard to do, and she agreed. Wearing purple exam gloves to bed is the next bed option. It is supposed to turn the spots bright red and since I'm doing some holiday visiting, I'm not quite ready to do it.

Here's something I wrote about a pill that is supposed to cut down on skin cancer incidence. 

Usually I try to combine dermatology with something else, but the appointments are hard to get – I couldn’t even get one with my regular doctor – so I took a “stand-alone.” It was kind of silly because I also went on Friday, for ECP (the light therapy), which I had absentmindedly changed from Thursday because I thought we had book group Thursday, which is our usual day. It had said right in the emails that we were doing it Friday for our holiday party, but despite telling myself repeatedly to write things down, I didn’t do it. So I went down to Jo’s on Thursday and was uncharacteristically early, as in, a whole day early.

 Luckily I made an early appointment on Friday, 1 p.m., so despite getting caught in Friday traffic, I made it to the meeting almost on time.

Ooops!

It might sound like I’m launching into my version of Alexander and the Terrible, Horrible, No Good, Very Bad Day, or – take your pick – the dog ate my homework. Because Maddie decided she is done with stairs so we changed our routine, and this caused me to break my glasses. Not direct cause and effect, but you will see. She also decided she didn’t want to jump up on the couch. I remember when we wanted to keep her off, and now I’m sad for her that she can’t get up. In addition to glucosamine, I got her some CBD dog biscuits that seem to help; one night she even ran up the stairs. But that was the only time.

I got her a new big bed for the den. For our morning routine upstairs, I would lie down and put my glasses under my dresser and then snuggle with her, arm over paw, or paw over arm. When we changed to downstairs, I didn’t have a habitual place to put my glasses. I should have put them on top of something but instead I put them next to me…and rolled over onto them and heard a crack. Then I had to hold the broken glasses up to my eyes to find the spare pair. I ordered a new pair from Village Eye Care, at the Commons. I know you can get them cheaper on line or elsewhere, but I want to support my local business.

The doctor (my friend Steve Markow) came out to chat. I told him my eyes felt all squinty and dry. He went into the back and came out with some sample drops and put them in my eyes. We gave each other an update on our families and had a hug. You couldn’t get this if you ordered on line.

Yesterday at the end of the storm, with mush on the ground, Maddie and I walked to the corner and across the street. A man shouted out from a car, “Come on old lady, you can do it!” I said, “Are you talking to me?” He laughed and said, “No, the dog!”

Earlier in the day, when we were taking a walk down Sycamore Knolls, a car slowed down, and dog biscuits flew out the window. It took me a minute to realize that it was Bert Willey, my painter. A few got lost in the snow, so he threw out another. Then she found the rest in the snow.

 Guys in cars, talking to dogs.

In the woods and in Oklahoma, in New York

Central Park woods

I “only” got stuck three times in my most recent ECP session, so that is progress.  I thanked the nurse who got the needle in my arm on the second try. She said she didn’t know why I was thanking her and I said it was because the last nurse did it three times. It is a very yucky feeling when it doesn’t go in right. They get it in but it hurts in an unusual and specific way that tells me it has to come out and they have to give it another try.

The added Cymbalta at first seemed to help my aching feet, but then it didn’t, and it is confusing and upsetting because no one person says the same thing as to whether to add a certain drug or try more CBD and a small amount of THC and if so, how much and how often. I am on a relatively low dose of gabapentin – 1500 milligrams a day – and the neurologist had said I could take more but didn’t specify how much. I met a woman who is on 2,400 mgs., and it seems to help but then it messes with her head. Neuropathy sufferers can bond the way plantar fasciitis sufferers do. If you don’t have it, you don’t get how pain in your feet can affect your head. The woman and I talked about how odd it is that your feet can feel numb, and as though they’re wrapped in gauze, and be painful and tingling at the same time.

I think I need to see the neurologist again to get more specifics, and now I will just revert to an oldie but goodie: yada yada yada. 

Though I haven’t been having luck with my feet, I’ve had it on a couple of other fronts while in New York for a week.

View from theater seats

On Monday, I went to a yoga studio where I’ve been a couple of times, YogaWorks Eastside, and said I wanted to pay for a week’s worth of classes. The person at the desk said he had no record of me, and therefore I did not exist, and therefore I could have a free week of yoga. And also a free loaner mat. I wasn’t going to protest. He signed me up for a week’s worth of classes. The teacher of the Hatha Yoga class that I was about to take was listening. At the end of the class, she smiled and said, “Now you exist.” I took the same class today, bookmarking the week. I haven’t done yoga every day since I was in Costa Rica! 

The guidance has seemed very New York, focusing on getting anxiety to subside and quieting the tendency to rush around mentally with all the physical rushing around city streets. Since some might say I’m a little bit hyper (yes, also anxious) and that I rush around more than I need to (with the city possibly imprinted on my psyche), it has suited me well.  

The other day I entered the Today Tix lottery to see if I could get $40 rush tickets to see Oklahoma. (Following my daughter’s lead, again.) After yoga I walked through a downpour to Circle in the Square theater so I could talk to someone in the box office about seating availability. I usually do it on line but different sites had different prices and I wanted help sorting it out. It was 2 p.m., the time of the lottery drawing. I didn’t get the tickets, but I got an offer of $60 per ticket for seats that cost twice as much on some sites. 

The box office person gave me seats in the second row, and since she did it for me, I didn’t have to pay the service fee that I would have had to pay on line. The downpour continued through show time. It's a good thing it wasn't cold, because my feet were soaking wet. As my theater scout warned me, it had very dark undertones. Still, it leaves you humming.

As the New York Times review explained: the director has "reconceived a work often seen as a byword for can-do optimism as a mirror for our age of doubt and anxiety. This is “Oklahoma!” for an era in which longstanding American legacies are being examined with newly skeptical eyes. Such a metamorphosis has been realized with scarcely a changed word of Oscar Hammerstein II’s original book and lyrics. This isn’t an act of plunder, but of reclamation. And a cozy old friend starts to seem like a figure of disturbing — and exciting — depth and complexity."

In other news, I ate a giant matzo ball and walked in the North Woods section of Central Park, an unexplored area for me. At least the neuropathy doesn't keep me from getting around. Putting CBD lotion on my feet seems to help. In any case it feels good. 

Neurologist: OK to try pot for neuropathy

I've been so busy trying out my medical marijuana that I forgot to post. 

A couple of times I took a little too much and was not happy about it. The solution seems to be finding the right combination of CBD and THC and then doing mini doses.

Actually I keep starting to write and then going on to some other thing, so, before I drift away again, here's the scoop. The neurologist in Boston is all for experimenting with pot, and he left it up to me to decide how much to use and whether it gives me enough benefit to be able to cut back on the gabapentin. In Livestrong, several of the women who are taking it for pain were not surprised. One said that with no research to draw on, doctors want patients to tell them what works. 

Dr. David Matthew Pilgrim backed that up. He said that patients say it works, so he is all for it. He said that my dosage of gabapentin, 1500 mgs. a day, is in the medium range and if the pot doesn't work, I can increase it. It would be a lot easier to manage if it were as simple as saying "take two aspirin and call me in the morning." Nobody seems totally certain what to do about it.

In any case, the visit with Dr. Pilgrim was reassuring. 

He has a big title: Chief, Clinical Neurology, Brigham and Women's Faulkner Hospital

Instructor, Harvard Medical School, yet I never saw a doctor so friendly, warm, open and down-to-earth. It was the first time a doctor ever came out to the waiting room to get me. We had a lot in common, both native New Yorkers, and he went to high school a block from my alma mater, Friends Seminary. He grew up in Crown Heights, where Katie lives, and he went to Amherst College. We talked for so long that I don't know how he gets all his patients in. Judging from his reviews, he gives the same care and attention to everyone. I left with a smile after having such a pleasant visit. 

He grew up in the 60s, and I wonder if his acceptance of marijuana is due to his age. I know that Dr. Alyea, who is younger and from a different part of the country, is not a fan. 

It was a little odd to read the note about me that came through on Patient Gateway:

This 64-year-old right-handed woman with a history of AML, bone marrow transplant, graft-versus-host disease and treatment with chemotherapy has had 10 years of fluctuating numb and tingling feet.  They sometimes feel like she is walking on eggshells or that an electric current is present.

Appropriately dressed and well groomed. No pedal edema.  She has a skin rash consistent with graft-versus-host disease.  MS Awake, alert, attentive. Oriented X 3. Normal language and memory.

This patient has a generalized neuropathy likely related to chemotherapy and possibly graft-versus-host disease.  Her symptoms are well managed with gabapentin and medical marijuana.  I recommend that she continue to experiment with the medical marijuana and if the symptoms improve, she can lower the gabapentin dose in 300 mg increments as tolerated.

If the symptoms worsen, we should increase the gabapentin dose.  I explained that the gabapentin dose can be pushed as high as 900 mg 4 times daily.

In my opinion it is not exactly well-managed, or else I wouldn't still be looking for more help. Having an electric current running through your feet is not the best way to get through your day. I imagine he has seen people who have it worse, and I know of some who do.

I told him that it bothers me less when I play tennis; I assume that moving around helps the circulation, moving faster helps my balance, and concentrating on the ball keeps my mind off my feet. I told him that sometimes people say I walk funny, which I don't appreciate, because I didn't ask. He had me walk, then jog, down the hall, and he confirmed that when I move faster, my gait is closer to normal.

The other part of his prescription is to play more tennis. I said I would love to do it but I can't afford to play much more. In the summer I don't have to pay for court time but then I run into the problem of getting too much sun.

Speaking of summer, here's something I wrote about Tom Brady's misconceived ideas about sun protection: Penalty on Tom Brady for Sun Protection advice.

Please let me tell you about my feet

From Our Neuropathy Friends Facebook page

First of all, I'll say straight out that nobody wants to hear about your feet (or mine) unless they suffer from the same condition.

For example, if someone asks how you are, and you say, "My feet are killing me!" you're probably not going to get a good response if their feet are fine. If you say that your plantar fasciitis is acting up, and they've had the same infuriating ailment, you could probably talk for a long time. Similarly, if you say your neuropathy is driving you crazy and you're talking to a fellow sufferer, you'll be good to go. If not it is just not going to sound that interesting, or that believable for that matter, to try to explain to someone that your feet can be numb and painful at the same time, that you feel like you're walking on rough sand, or on little nails, or that your feet have an electric current in them. Or that, tantalizingly, it will get better but then it will sneak up on you again. 

The 4,325 members of the Facebook group Our Neuropathy Friends know what it's all about. I don't post much, but I did the other day, and I got some helpful advice, and support, which is also important. Of course the remedies are all over the place because each person's experience is individual. Some have found relief from CBD. I've also checked in to a group called CBD Oil Users, with 161,860 members. 

I take1,500 milligrams of gabapentin (Neurontin) daily. It takes the edge off, but the results are not great, because there always is, at minimum, a buzz. I get acupuncture and have been using some CBD. (Short for Cannabidiol, CBD is the non-psychoactive component of the cannabis plant, not the part that gets you high, tetrahydrocannabinol (THC). 

Sometimes I think it's helping, other times, I think not. I'm encouraged, though, because studies have shown that cannabinoids can alleviate neuropathic pain. I recently met some people who are happy with its benefits for themselves and for their dogs. In case you haven't noticed, you can get CBD all over the place, even in the mall. Where I'm getting it, and how I'm using it, is material for another post.

With the latest flareups, I decided it was time to check in Dr. Ugonma  Chukwueke, (pronounced Chew-kwe-kee) the Dana-Farber neurologist I saw a couple of years ago. I left a message and was supposed to get a call back but didn't. Melissa nudged. I got a call back from a scheduler who said Dr. Chukwueke is not the person for me. Neuropathy like mine, resulting from chemotherapy, is not her expertise. She specializes in neuro-oncology, or neurologic complications of cancer, for people who have cancer, not people who have chronic conditions resulting from treatment. I wondered then, why I got sent to her in the first place. (Picture eye roll.)

In any case, I now have an appointment for next Friday. It's at 9:30 a.m., which is not so great. But the doctor, David Pilgrim, sounds great. He has excellent patient reviews and the impressive title of chief, clinical neurology, Brigham and Women's Faulkner Hospital, and instructor, Harvard Medical School.

 In addition to discussing alternative treatments, I'll bring up the possibility of switching to Lyrica (pregabalin.) As I wrote in this story, both gapabentin and pregabalin have side effects. I don't think I'm taking the highest dose of gabapentin, but I've been afraid to take too much more, for the reasons the patients discuss in the story.