Thursday, February 21, 2019

'Welcome to the Starbucks of pot shops'

View from the medical side of NETA
A funny thing happened today in my Bay Road tennis group.

My partner and I won a set 6-0. When we went to the net, she asked if they wanted cream cheese with their bagels. She has known them longer. I laughed and told her to ask if they wanted it with chives. They didn't seem to hear, though. "They don't think it's as funny as we think it is," she said.

We switched. I had another partner. We won 6-0. I would say that I was having a blast except that I don't like the word blast, because an excess of blasts (immature cells) in your blood is what happens when you get leukemia.

I was seeing and feeling the ball. Also, the neuropathy in my feet wasn't as bad as it has been. I am cautiously optimistic that my medical marijuana purchase might be helping. I feel slightly lighter on my feet. My defensive lob was happening instinctively. You don't want to do it all the time but it works when you need it. It wasn't a big part of my repertoire, so I took one lesson in doing it from Coach Michael at the Enfield Tennis Club, and then I figured it out. The critical player whom I've mentioned complimented me. Later she said it was like old lady tennis. I think her compliment might have been backhanded. But it didn't bother me. Much.

As I mentioned previously, I have been using some CBD lotion and drops. Last week I got a mixture of CBD and THC in some gummies. You don't need a medical card, but it helps both because you don't pay the tax and you do skip the line. So I took my new medical marijuana license over to NETA – New England Treatment Access – in Northampton. The menu is crazy. You almost need an advanced degree to understand it. Back in the day, who would have thunk.

When I pulled up, I saw that the crowds necessitated the presence of a police officer directing traffic. I rolled down my window. The police officer told me, "Welcome to the Starbucks of pot shops." As a patient, I got to walk straight through the main door, without waiting in a line outside, and then inside to the left, where there was also no line and where I sat down in front of shiny display cases. It was overwhelming. The staffer who helped me said that his mother has neuropathy and that marijuana got her off of prescription drugs.

I think forgot to say that I'm doing Livestrong at the Hampshire Regional YMCA. I put it on Facebook but not on my blog. More on that later, but I'll just say now that everyone who had chemotherapy now has neuropathy. Several said that they do not need prescription drugs, only some combination of CBD and THC. I don't know how theirs compares to mine in severity.

I'll bring all this up today when I see the neurologist in Boston. It will be interesting to hear his opinions on the whole cannabis thing.

Friday, February 15, 2019

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.

Saturday, February 9, 2019

The things people say

It's backwards day on the blog today.

My most recent Thursday tennis contract at Bay Road went extremely well to the end, but took a downturn in a conversation after we got off the court. So, from good to bad.

The same day, the ride to Boston started off on a bad note when the driver arrived and said she needed to go get gas. I was annoyed. She was new, and I told her I don't want to make a big deal of it but they really want me to be on time, and drivers are supposed to come with a full tank of gas. She started pouring her heart to me, and by the end of the day, when she left me off at home, I wanted to adopt her. So, from bad to good.

First, tennis. As I wrote previously, there is one person in the group who is very critical. Only of me, the new kid on the block. (It's my second year.) I told my friends in Enfield, where I never have a problem, some of the things this woman has said and done, such as criticizing how hard I drop the ball when trying to figure out if it is dead. When they hear it, they roll their eyes and say it would be hard to put up with.

Well last week, we made it all the way through with good tennis and no problems. We even laughed when we were partners and each of us missed a shot because we admitted we were admiring the other's shot. She told me "good shot" a few times.

Afterwards, when we were packing up to go and talking about our aches and pains, I mentioned the neuropathy in my feet. I said it bothers me LESS when I play tennis. Maybe it's because the circulation is better, or maybe it's because I'm thinking about other things.

In any case, after I brought up the neuropathy, she said, "Oh, so that's why you move so slowly!"

That's not right for anyone to say. But she is a cancer survivor who should know better about criticizing someone for side effects. Hey, she tosses the ball so many times before serving that sometimes I feel like I'm going to jump out of my skin from the annoyance of it. I just try to bounce on my feet and get ready for the serve, when it finally comes.

Plus, BTW, I'm not THAT slow.

Just wondering, by extension, if someone had a headache, would anyone say, "Oh, that's why you look so bad?"

OK, thanks for listening, on to my poor driver.

I went to get into the back seat like I usually do, because I like to spread out my newspaper and other stuff. She seemed offended.

"You're not going to sit in the front?"

I got in the front.

She has training as a hairdresser, but she's driving so she can have a more flexible schedule to take care of her two young daughters. Her husband left her because she was no longer fun. He denied having an affair, but she found him out through looking at text messages. It was a couple of years ago, but she is still devastated, uncomprehending. She was sweet and pretty. I was not happy with him.

I think this is about as far as we got by the time I got to Boston for the light therapy on my skin, at the Kraft Family Blood Donor Center. I told the nurse I was exhausted, and, after the needles were in, I promptly fell asleep. I almost got in the back seat for the ride home, but I couldn't bring myself to do it. So I got more of the story.

Her mother abandoned her as a child and went off somewhere or other on the west coast. Her father was alcoholic and abusive. She got out of the house and stayed with friends. At least now, her mother-in-law seems to be on her side and takes care of the kids when she is driving late.

She said she put up an online dating profile but took it down. Ever the organizer, I looked up Meetups in her area and told her that she might meet somebody by going out and doing something she likes.
Then, to show her she isn't alone, I played "Anybody Have a Map?" from Dear Evan Hansen.

Can we try to have an optimistic outlook, huh?
Can we buck up just enough to see the world won't fall apart?
Maybe this year, we decide
We're not giving up before we've tried
This year, we make a new start

She seemed to like it. I always love listening to it.

I said I hoped I would see her again, and she said next time she would come with gas.

By the way, I wasn't late for the appointment.