Saturday, March 16, 2019

St. Pat's race: going the distance but not running the course

I’m still recovering from my finish at the Saint Patrick’s Day Road Race two years ago, so I didn’t try to run it today, though by the end of the day I felt like I had done it.

South Hadley friends and their friends 

With Ben after the race
In fact, between dog walking and a run at home, and then parking a good distance away and walking to the finish and pushing through crowds and milling around and trying to find Ben, and then finding him and his friends and wandering around some more and then walking back to the car, while juggling a beer, French fries and a hot dog with mustard and relish oozing off of it, I went further than if I had run.

It felt like a great accomplishment to find Ben and the rest of the group in front of Francie’s Tavern, as planned – yes, it could be accomplished without cell service – and be their official photographer. What a crew!  I went dressed as a runner, not as a spectator, so I was a little colder than I would have liked.  At home I had done my little run and then gone pretty soon after that to Holyoke. I didn’t change. Maybe I wanted to blend in…or maybe I was in a rush.

A while back I considered maybe trying it again, but I wasn’t running any further than three miles and wasn’t liking it enough to increase my distance. I still think I might want to try it because there wasn’t anything like it. I get a kick out of picking the older runners out of the pack because they’re proof it can be done. Maybe if I find the right balance of THC and CBD it will go to my feet but not to my head.

The race is always a thought-provoking day. If you’re just dropping in here, the reason is that it led to my leukemia diagnosis. My claim to fame used to be writing about it for the Lives page of the New York Times magazine, but that claim was eclipsed by my accomplishment of finishing last and writing about that and a comeback of sorts for Women’s Running Magazine.

Since I’m into this 10-year retrospective thing, I went back into my archives and found my post from around the same time  of year, March 18, 2009, when I had been in the hospital for three months and wasn’t walking normally yet. While I was scrolling through, I got stuck looking at some of the photos. I was really skinny.

Here's some of what I wrote:

“I can make it up and down the hallway with a walker and that is getting easier as I am losing more water weight, but I still I look longingly out my door at the people who are just walking without giving it a thought. It is interesting what we take for granted.  I am due to go to rehab after I leave here so I assume that walking will be second nature in the near future.”

A little perspective goes a long way.
It was a super fun day.

Tuesday, March 5, 2019

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.

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.

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 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.