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.

Wednesday, January 30, 2019

Celebrating two momentous birthdays


You might think it odd that I thought tomorrow was my birthday while it’s really today, but you might cut me some slack if I reminded you that I have had five birthdays, and it’s hard to keep them straight.

Top, with my donor, Denise Ledvina, in 2011;
bottom, celebrating Marge's 100th birthday this weekend
Today is actually my re-birthday, the 10th anniversary of my fourth stem cell transplant. I didn’t realize it was today until my donor, Denise, sent a happy re-birthday email.

I think I knew at one point that I was off by a day, and I was going to fix it on the blog intro, but then it slipped my mind.

The momentous occasion took place around 9:30 p.m. on Jan. 30, 2009.

My re-birthday dessert
I double checked by looking back at my blog post from the day after the transplant.

It began, “I meant to post yesterday evening at my leisure while awaiting my cells, which I thought were due to arrive at the cell manipulation lab at 9:30 p.m. and would therefore come to me around 11. (Cell manipulation lab sounds so futuristic; I am grateful that in terms of scientific advances, the future is now.) Then Helen, my nurse last night, said they would be ready for actual infusion around 9:30 and that she would begin pre-medicating me at 9 with Ativan and Benadryl, at which point I got all discombobulated and couldn’t eat my dinner, let alone write.

"It’s not that you have to do anything to receive the cells; you just lie there and try to stay calm. But it feels momentous, especially when they hook you up to a monitor tracking your heart rate, blood pressure and oxygen saturation. Of course it also feels enormous because I know how important those cells are to me. The infusion took about 45 minutes and went smoothly most of the way while Helen watched the monitor and me.”

The rest of the evening did not go so smoothly. I wrote,

"The infusion had just about finished when I reacted, either to the cells or to a fever I was going to get anyway. I started shaking vigorously, and my heart rate went up. Helen gave me 25 mg. of Demerol, which didn’t stop the shakes. She paged a doctor who came in quickly. I got another dose of Demerol, more Benadryl, hydrocortisone and some Tylenol. Also they put me on oxygen."

Marge's birthday cakes
I was worried that the cells would not take, but as you can see, they did. I wouldn't be here without Denise, the Dana-Farber Cancer Institute, and The Gift of Life Bone Marrow Registry.

On Dec. 25th, 2008, in a post headlined Downhill all the way, I wrote, after I learned about my second relapse, that I thought it was the end of the road. I was thinking I wouldn't see my children finish growing up, wouldn't see my grandchildren.

I wrote about wandering over to 6A, where I would soon live, asking one of my old nurses, Myra, how I could go through chemotherapy and transplant again.

“Well, you have 48 hours to have your pity party, then you have to quit it and put on your fighting gloves,” she said.

It’s hard to believe it has been 10 years.

In this Philadelphia Inquirer story , I wrote about how Denise's life-saving donation, through The Gift of Life, was inspired by her desire to help the great jazz saxophonist Michael Brecker.

Another momentous event over the weekend was the celebration, on Sunday, of my Aunt Marge’s 100th birthday. A group of us gathered in her apartment for a mid-afternoon party. It was a privilege to be there to mark the occasion and to see her looking so pleased, and so great. You can tell from the smiling faces in the photo that everyone was having a good time.

We had gone down to New York on Friday.

On the way, we had to stop at the dentist. I had catastrophized. I thought I had lost a chunk of my tooth and that meant yet another tooth was disintegrating, but I forgot that I had a filling in said front tooth.

So it was just a filling that had fallen out. He replaced it, and off we went.

View from theater seats
I wanted to go down to Little Italy to an old haunt, Puglia’s Restaurant, so we regrouped and off we went. The food was still good and the singing was still fun. We stopped in for a cannoli at the bakery down the block on Hester Street.

The next afternoon, we went to Lincoln Center to see “My FairLady,” starring Laura Benanti as Eliza and Danny Burstein as her father. It was loverly and magical.

On Sunday before Marge's party, there was brunch in Brooklyn and a walk (more loveliness) through Prospect Park.

Since getting back home on Monday, I've been a little under the weather, but not so much so that I didn't have room for my share of my re-birthday dessert with a couple of special people at Food 101 in South Hadley. 

Thursday, January 24, 2019

More drama on the dental front

Another great Health Union illustration
Of all my posts that Health Union has shared on its Bloodcancer.com facebook page, so far the one on Chemo and Teeth, Not a Pretty Picture, Part 1, has garnered the most reaction. (I had to write it in two parts because there was so much to say.)

Readers said they could relate to losing teeth and spending money. Clearly I am not alone.

I started out by expressing my dread when a tooth chipped not long ago. I wrote,

I don’t have much dental real estate to spare. I have lost 12 teeth, one by one or two at a time. It’s possible that my dentist might be able to repair the tooth. But the teeth I lost were so fragile they could not be repaired when they became decayed and either cracked, chipped or even crumbled. When I felt that I was chewing on something that should not be there, and when I spit the tiny piece of tooth into my hand, I thought, “Oh no, not again.”

I ended up losing the tooth and needing another bridge.

I don't have dental insurance. The plan available to me was terrible. In general, dental insurance stinks.

I explained, "Chemotherapy causes dry mouth, which is bad for dental health since saliva helps prevent tooth decay."

Also, a compromised immune system during chemotherapy opens the door for bacteria to have a field day on your teeth.

After I wrote the above part of this post, I was eating a salad and felt something sharp in my mouth. I spit the jagged piece out. It looked like a piece of a tooth. But I couldn't figure out where it came from. I went to look in the mirror. It looked like I had a piece of food lodged between my two front teeth. I looked closer. What I thought was food was actually a HOLE where part of my tooth had been. I'm afraid I'm going to lose the tooth. It is in the worst place.

This happened yesterday. I got a dentist for two days later. Today I called to see if they had a cancellation. I had a toothache. They couldn't fit me in. I'm going tomorrow.

Did I attract some malevolent toothy force by writing about my teeth???


Today I forgot my troubles during some good doubles at the Bay Road Tennis Club.

Somehow or other, though, I whacked my left arm with my racquet.  Must have been a misguided follow through.

A big purple bruise appeared almost immediately. Either I'm very strong or I have very thin skin. At least my partner and I won 6-0. The other two wanted a (fun) grudge match. We ran out of time at 4-4. I didn't want to go out in the pouring rain, so I sat around for a while and watched a Pickleball game.

Friday, January 18, 2019

No, I am not really having a baby

Yesterday I had an interesting drive to Boston.

The driver was nice but didn't speak a word of English. I needed to tell him a few things, so first I called Katie.

She didn't answer, so next I used my phone. He wasn't sure if Dana-Farber would be coming up on the left or the right. I asked the phone to tell me how to say left. As you can see, the answer is izquierda.

When we got there, I wanted to say "I'll call you when I'm ready," so I asked the phone. That little Siri sometimes doesn't get things straight. She said, "Voy a tener un bebé." We both laughed. It means, "I'm having a baby."


When it was time to leave about two and a half hours later, a nurse who speaks Spanish got on the phone. He told me that the driver was a few minutes away and I should call when I was ready. He also told me how to say I was ready but I immediately forgot, so I got it from my phone. Estoy listo.

I have switched my ECP sessions (the light therapy for my graft vs. host of the skin) to Thursdays from Wednesdays, every other week, for two reasons. One is that Thursday is the only day Melissa can see me now. I could have slept over and kept it at Wednesday. But also I would have had to miss about 10 minutes of the Wednesday Livestrong class. The trainer who did my intake said it was OK, but when it came down to it, I saw that it would probably be disruptive.

I'll miss Larry and Lisa, the Wednesday regulars.

But I already had a good conversation with a new patient and his wife. He was only on his 18th session and was at the point where I was when I started some two years ago, going twice a week.

He got such bad GVHD of the eyes (ocular Graft vs. Host Disease) that he had to get one cornea replaced. 

She wanted to know when you know when to stop. The nurse and I both said you don't really know.

She said it's like the Hotel California. It took me a minute to get that she was referring to the Eagles song. She said, "You know, you never leave."

I assume we'll leave sometime, but it's hard to know when that will be.

Here's the verse.

Mirrors on the ceiling
The pink champagne on ice
And she said: "We are all just prisoners here
Of our own device"
And in the master's chambers
They gathered for the feast
They stab it with their steely knives
But they just can't kill the beast
Last thing I remember, I was
Running for the door
I had to find the passage back
To the place I was before
"Relax," said the night man
"We are programmed to receive
You can check out any time you like
But you can never leave!"


Wednesday, January 16, 2019

A big re-birthday is around the corner. Kineahora.

I just completed a post for Health Union about the magical thinking, or superstition, that keeps me from saying that on Jan. 31, I will celebrate 10 years since my fourth bone marrow transplant.

Chances are good that I'll make it, but you never know, and I don't want to jinx myself.

It's all about the wording.

In the post, I explained that it might be OK to say it if I added the Yiddish phrase kineahora – “no evil eye” – to protect myself. (It’s pronounced KINE-AHORA.) It's even better if you spit three times, or in the interest of sanitation, make a spitting sound. It could be toi, toi, toi; pu pu pu; poo, poo, poo; or other variations.

So:

“I’m looking forward to an important cancer anniversary, kineahora poo poo poo.”

It also works well if you're complimenting a tennis partner.

"You had a good shot, kineahora."

The author of a post on the site The Word Mavens writes, "Jews are not the only ethnic/religious group to believe, at least a little bit, in superstitions. But maybe we put a greater stock in our superstitions because we’ve had such a tough time of it these past 5,000 years.

"If you slip up and brag – or if someone compliments you, what can you do? You can invoke the Yiddish phrase kineahora – 'don’t give me the evil eye.' As in 'I’ve felt good all summer, kineahora.' Or 'You look nice today, Sylvia. Is that a new dress?' 'Kineahora. I just got it. Do you like it?'

"The derivation of the phrase is from the German kein, meaning no, and the Hebrew ayin ha-rah, the evil eye. The kein and ayin are blended into one word: kein or kayn – keinahora."

I learned that you can go to the Evil Eye Store for protection. I saw some nice things, but I didn't buy them.

Murano evil eye pendant protection charm and multi-evil eye pendant
On another topic, in a previous post, I wrote about the solidarity and sorrow that comes from belonging to a community with people who have, or have had, similar illnesses. I had to break it into two parts because there is so much to say. The solidarity comes from meeting people who know what you're going through. The sadness is well known to readers of this blog. It's about losing friends like Patricia, Anne, Dori and Vytas.

The kineahora post took a ridiculously long time to write, while the solidarity and sorrow one was pretty free-flowing. Maybe it's because I needed to do some research for the former. Looking things up on the internet is easier than going to the City Library, which I did in the old days at the former Union-News, when doing research on microfiche would make me dizzy. Yet there is so much information on the internet that you can end up with information overload – also dizzying – and it can take twice as long.

Also there was something about the topic. The weightiness of it. At the paper we used to revel in writing the stories that came out with the ease of a hot knife cutting through butter. This was not that kind of story.

On yet another topic, here is a link to a podcast in which I share some of my story.

Thursday, January 10, 2019

Don't look at the photos

In the process of writing about my graft vs. host disease of the skin for the Health Union website, I  had to cover my eyes when scrolling through the photos in the review of Cutaneous Manifestations of Chronic Graft-versus-Host Disease.

It shows me that many patients have it much worse than I do. There are 16 possible manifestations. I had to look up the meaning of some of the words to find out if they apply to me. 

For example, erythema, basically reddened skin. Yes, I have it, mostly on my hands, and in patches on my legs.

Also:

Scleroderma – thickening and hardening of the skin – one of the first signs, much better after treatment with the light therapy, or extracorporeal photopheresis. 

Rippled or cellulite-like fibrosis – "Skin appears to be rippled in areas rich in adipose tissue-volar arms, abdomen and lateral thighs; caused by fibrosis of septae of subcutaneous fat." OK, so fibrosis is the thickening and scarring of connective tissue. Some words, you look up, and if you're a layperson, you still don't know what they mean. In summary this is the rippling and dimpling that I've complained about. It may not get much better. But it's getting softer, yay!

Positive prayer sign – "Characterized by patient inability to completely close gaps between opposed palms and fingers when pressing their hands together in prayer’s position, or acute limitation of wrist dorsiflexion."

Well, I can close my hands together but I have limited flexibility in my wrists, especially on my left side, leading to my hand making a cup instead of lying flat during yoga. Also my wrists hurt when I try to place my hands flat on the floor. This does NOT seem to be getting better, and in my quest to accumulate more and more specialists, I am going to go see a hand therapist. My dermatologist set me up with one in Boston. I called to ask if specialists do the same thing around here. The answer is yes. I haven't made the call, but I plan to...when I get around to it.

Sometimes the list of things I need to do just to maintain myself get so long it gets me down.