Sunday, April 28, 2019

In Boston, stepping up for life

Finishing first lap, Chestnut Hill Reservoir
My sister drove me to so many doctor visits and hospital trips that I lost count, so it was a great counterpoint for her to drive me to something super fun and celebratory: The Steps for Life 5K to benefit The Gift of Life, the organization that got me my bone marrow donor.

I drove to Newton last night after playing two hours of tennis. I'm still a little under the weather – this cough/cold that's going around is a long one – but I wanted to do it. I haven't been running very much but thought I could do 3.1 miles, and I wanted to do my small part in raising some money and showing up to honor The Gift of Life.

This morning around 8:30 or so, we went over to the Chestnut Hill Reservoir, where I got my number, shirt, and an orange ribbon reading "Recipient."

Over at the Dana-Farber booth (they were a sponsor), it was exciting to meet two women who work in the department that finds matches for patients. I said hello to Dr. Corey Cutler, Dana-Farber's director of stem cell transplantation, and a speaker at the event. I told someone else the story of how Denise ended up donating for me after getting swabbed at to a donor drive for the late, great jazz saxophonist Michael Brecker, who, sadly, could not find a match.

At an emotional ceremony on a makeshift stage, a recipient and donor met for the first time. Then donors and recipients, including me, went up to join them. I was afraid I might recreate my fall UP the stairs in the Paris Metro and trip going up to the stage but I hopped right on up.

I had been watching the forecast and expecting rain, but it was just cloudy and cold, with a little wind. We did group warm-ups to music – lunges and jumping jacks and waving our arms around, very festive  – and then the runners and walkers (and some dogs with their people) went up to the track so we could go twice around the reservoir.

I can't say I really trained for this event, but I figured that 3.1 miles would not be so bad. The first time around was pretty easy, but I was feeling it the second time around. I thought of walking for a couple of steps, but my mind, and my momentum, was attached to my slow jog. I'm kind of strict with myself. "You didn't walk when you had leukemia during a 10K, and you're not going to walk when you DON'T have leukemia and are going half that distance." Plus, the tiny bit of momentum kept me from walking; it was easier to keep doing my so-called run.

The finish line, around the bend, looked far away. I'm glad that Diane took my photo after my first time around. She also took one when I finished, but I deleted it from her phone. (The equivalent of how our mother used to rip up the photos of herself that she didn't like.) Note to self: Next time take off the transitional glasses that get so dark outside that I look like a Blues Brother.

I was kind of bent over and not looking so great when I finished. I motioned for Diane to come over so I could hold onto her shoulder while we walked away from the track so I could get some water and a very welcome bagel with cream cheese. That Diane sure has a good shoulder, literally and figuratively.

I felt like I needed to stretch out my back, so I found a little piece of grass and lay down. A Git of Life staffer came over and asked if I was OK. I said yes, just stretching. He asked if he could help me up, and, well, maybe you could guess that I said no thanks.

If I do another 5K, I think maybe I'll practice a little more. I miss the way I used to feel on those long runs, but the neuropathy in my feet makes them harder to do.

When I lamented my slower pace these days, Diane pointed out that I'm the only four-time stem cell recipient who played two hours of tennis, drove two hours to Boston and then ran three miles. As our father would say, "Good clear thinking."

Monday, April 22, 2019

Two seders and an Easter dinner

Callen and Nell
I was a little under the weather leading up to Friday night, and I thought of not going to the home of my extended family, the Chipkins, for the first seder, but I rallied. We have shared many joyful celebrations and one of the worst nights of our lives. At the seder, someone almost snuck in the name of the Orange Monster (this is a hint regarding that bad night, in 2016,) but a murmur went up in the group to get us back on course. I'm always glad to be with this warm, welcoming family. It's a time of being grateful for many things, and the next day in South Hadley, we were all grateful that Joe took over in the kitchen at our seder after I got things going, because who knows, I might still be serving the potatoes. We have a wonderful tradition: Diane leading a beautiful seder, with contemporary tie-ins, and such must-haves as David's pot roast and Bob's booming baritone version of "Let my People Go." Having Nell and Callen "play" the piano was a joy. Playing with them was a joy. Even being able to get down on the floor and up from it is a joy, and in the theme of the on-and-off 10-year retrospective, here's a post about how I couldn't have done it when I was in the hospital, needing platelets and blood after one of many trips with Joe to the ER. It was a little less than four months after my fourth transplant. I had a fever and was worried about what might be coming down The Pike this time. It turned out to be another fungal ball. I wrote in this post, that after a little walk, "I got dizzy and felt like I might faint. I knew that my blood pressure had fallen. I made it back to my room, and when the nurse took my pressure (standing) it was 65/54. The episode earned me five hours of IV fluids."

Being under the weather now, as compared to then, is obviously no comparison. I've been dragging my feet, literally and figuratively, about doing The Gift of Life 5K in Boston this coming Sunday. Dragging literally, because it's hard to shake off the neuropathy-induced lead boot feeling, and figuratively, because I only signed up today. The Gift of Life is the organization that got me my donor; I signed up for the run last year but at the last minute went to Costa Rica, so when they asked again this year, it seemed like an important thing to do. To make a donation, please click here.

I haven't been running very much and want to get in some little runs before I do it. Yesterday I went a little less than three miles (OK, 2.7), then came back and jumped in the shower so that I could be ready for my next activity, a trip to Framingham for Easter dinner at the home of my Partner/Boyfriend/Honey/Beau's son. Could we take a vote? An Easter egg hunt awaited us. When we got back, we took Maddie for a nice walk.

Today I'm dragging and seem to have neglected the part about finishing the cleanup. Tomorrow is another day...

Earlier in the week, it was AML World Awareness Day, and I wrote about more than 15 years of knowing more than I never wanted to know on the topic.

Sunday, April 14, 2019

Ups and downs in New York City

Pre-theater toast to good times together
The photo is of Katie's hand and my face at Fig and Olive, and Katie took it for me to send to Chaska and Serena to thank them for introducing me to the restaurant. I remember us going there and sitting at a big round table and sharing delicious dishes. 

We were eating before an early show (7 p.m., what would the Spaniards say) of...drum roll..."Kiss Me, Kate," so there I was, going to see the sublime Kelli O'Hara, accompanied by the fabulous Katie Doody, and I was pretty happy! It was a fun, big Broadway musical, with virtuosic singing and dancing, and it didn't matter to me that while the reviewers loved the singing and the dancing, they took issue with the pace of the show and with a plot that the director tried to update without total success. (It's about a theater company is putting on that problem play, "The Taming of the Shrew." ) Hey, I didn't doze off and ask Katie what happened, so that is a success. Afterwards, we had our traditional cheesecake at Junior's, home of "the world's most fabulous cheesecake."

I always take the ticket home as a remembrance – my ticket jar is brimming – and this time I also took another remembrance: a black-and-blue mark, on my thigh, that is bigger than a cantaloupe. I was walking on Madison Avenue after doing an errand when I felt something at my ankles and looked down. I saw a pair of red boots and a dog leash lassoing my ankles. A youngish woman was walking her dog and giving the leash too much slack and not paying attention. I crashed onto the sidewalk. Blood dripped down my left shin. I leaned against one of those big green trash barrels and got help from a cute guy who was outside trying to get people interested in the Tribeca Film Festival. It was something about getting free tickets if you switched to AT & T.

His friend ran into the store to get a paper towel. The woman asked if I was OK and then wandered off. I muttered something about not knowing how to walk your dog. The guy helping me reminded me of Joe. We talked about the U.S. Open while the bleeding on my leg slowed down. Suddenly the garbage can began to tilt back, and he grabbed my arm so that I wouldn't fall back and hit my head. I said I thought these things were more stable, and he said they are stable, but a homeless man was reaching in from the other side. 

I had driven in, so obviously I was driving out. I sat on an ice pack for as long as I could. After I scalded my tongue on hot coffee (I was thinking about Dan), I got a blister on my tongue and, on a scale of 1 to 10, reported my pain at about and 8 when I had a checkup with Melissa at Dana-Farber a few days after. Between the growing bruise on my right thigh, which I didn't even know I had hit, and the blister on my tongue, I couldn't do without Tylenol and a little Advil. One night I even took an oxycodone, figuring I'd give my liver a little break from the Tylenol. 

With Melissa and Dr. Marty
My pain is manageable and down to a three or four, but I'm not sleeping that well because it's hard to lie on my right side or turn over. Still, I went for a little run, played tennis, and went to a "Pickle Fest" at Bay Road Tennis. Yoga – my first time in Serenity Yoga's new studio – was good for me but I decided to skip today because every time I ended up on my right side I got an extra shot of pain. All in all, it's a pretty good addition to my fall list.

Melissa had said she knew I got worried when my platelets were low, so she said that everything looked good...and my platelets were a little down but this happens if you have a cold, which I had at the point. Maybe that's one reason why the bruise is so big. She had found Dr. Marty (Francisco) in the hall and brought him in. I said, "What are YOU doing here?" I was half-joking, as a way of saying that since he's the infectious disease specialist maybe something was wrong with me, but he said that he had just come in for a hug. I put in this old photo to show that he has an infectious smile. After the good visit with the good hug,  I went off ECP and conked out. 

Saturday, April 6, 2019

On mourning the death of a high school friend

With Dan at Sylvester's Restaurant, 2015

It was so great to have a high school classmate living in the area. I could get together with Dan Green – Danny to high school friends – without missing a beat even if we hadn’t seen each other for a while. His wife, Sabrina Hamilton, was so much younger then, meaning that at Friends Seminary, where she in the class below us, a year made a difference, just like those in the class above us seemed so much cooler. But when Sabrina and Danny came over for dinner when my sister-friend Emily was at my house a few years ago, there wasn’t any difference. After they left, we both said that there was nothing like having the common language of having shared those special years.

Once, I told Katie that eleventh grade was the best year of my life, and she said, “MOM!” Meaning, what about the kids. I backed up and said it was the best year before kids. Danny was part of that whole picture, one of the best years BEFORE kids.

In modern days, he did my website for me, for free. I took him out to breakfast at a favorite hangout, Sylvester’s, in Northampton. A couple of summers ago we had dinner before going to one of Sabrina’s cool offerings at the Ko Festival. Last summer I met him there, and we chatted during intermission about his recent health problems and his slow but steady improvement. In the past six months or so we had been trying to get together. He had said he wasn’t quite up to it. Then one day we were going to do it. I think I remember it being a cold, damp day. Neither of us wanted to go out of the house. He said something along the lines of let’s blow it off and we’ll see each other soon. I said I’d come to their house and take a walk in the neighborhood. He said he’d let me know when he was up to it.

Besides our high school connection, we had both been through some tough times and come out the other end. We shared the ability, actually the need, to laugh about it. He had a funny little sardonic smile. He was hosting my website and said not to worry about it, he would pay the small fee and it would be all good. “Unless I croak,” he said.

I don’t understand the Facebook algorithms where you see some things and not the others. In any case I didn’t even know that he had had a hip replacement. But when I looked back last night, I saw that Sabrina had posted that he had the hip replacement and was doing well. Then Tami called and said she had devastating news. She had seen Sabrina’s post. He was home and was doing well. Then, she wrote, “But last night at about midnight, we suddenly lost this kindest, funniest, gentlest of men.”

I don’t know how this happened. I guess we’ll find out in the coming days. I just know that it is devastating and shocking and unexpected. The mortality rate after total hip replacement is approximately 0.25 percent. That means, it is extremely rare. Underlying health conditions add the to risk factor. In addition to the question about how it happened, there is the question of whether on that rainy day I should have gotten myself together to go meet him. I wish I had done it, but you can’t second-guess these things, because on that day, neither of us was up to it, and that was that. I mostly feel so sorry for Sabrina. She had written that they were looking forward to a pain-free life together. He had had his share of pain and was getting past all of that. High school friends are family. We have lost one of the sweetest, kindest family members.


Thursday, March 28, 2019

'Platelet pandemonium' a distant memory

Health Union illustration of me being unhappy about my hands
Yesterday I was a little grossed out and grumpy about spraying my ficus plant with dish soap to get rid of tiny little pests that might be mealy bugs. Of course I didn't protect the floor, so then I got down on my hands and knees to wipe up the mess. A little tree by now, it is like the Leaning Tower of Pisa. I keep trying to stake it up, with limited success. We've been together a long time. I don't want to give it up, so I just live with it. There must be something in here about living with imperfections.

You can't do this all the time, but it occurred to me, for the sake of perspective, to look at what I was doing 10 years ago. I knew I was still in the hospital, but I couldn't remember what was going on. When I looked it up, I saw that my platelets were so dangerously low that I never would have gotten down on my hands and knees. So being able to do it is a good thing, I guess.

In a post headlined Platelet Pandemonium I wrote,

"Yesterday it turns out that I had dropped to 4 platelets, as in 4,000, and the PA seemed to be kind of worked up about it. She said to be really careful and take it easy, i.e. don't fall. In the meantime she went to call the Red Cross for the platelets, which were nowhere to be found. They started a special search for me and I waited. The nurse had been wrong about platelets being available. I took a walk but basically held my breath all day, except for throwing up my whole lunch onto my tray (sorry...gross, I know). I don't think she was very happy with me. Shortly after that the nurse went home. I got one of the regular staff nurses and was happy about that."

Normal platelet count is 150,000 to 450,000 platelets per microliter of blood. So 4,000 is VERY low.

Certain things are a blur but others are in full detail. I clearly remember that nurse bolting out of there. It made me feel worse than I already felt.

It took a long time for my platelets to recover. I hover around the low edge of normal and am sometimes a little below, but I'm told that is fine. The sign of low platelets would be more than normal bruising or tiny little spots called petechiae, a sign of broken blood vessels. At times I had them all over the place. Now I only get black and blue marks when I hit my left calf with my tennis racquet when following through after a serve.

At last check, my platelets were 161, which is shorthand for 161,000. I may not be normal in other aspects, but I'm normal in platelets.

In other news, I wrote about the attachment we get to longterm caregivers (suicide alert) and about why I'm not happy about my hands.

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.