A long way from there: remembering the night of my 8th (re) birthday

With my donor Denise Ledvina when we met in 2011

In looking for my blog post from Jan. 31, 2009 – the date of my fourth bone marrow transplant – I scrolled through posts from later that year when I was at Dana-Farber a lot. In this one from that September, headlined No transfusions!, I wrote:

This week's clinic visit was a shocker, in a good way. I didn't need any transfusions! I had gone ready to spend the day, and I hardly knew what to do with myself. Well, I can say for the first time in a long time that I didn't spend the whole day at Dana-Farber.

Platelets were 21, still very low but up from 10 to 12, where I've been hovering. My hematocrit is pretty low – 25.3 – borderline for transfusion. But since I've been doing a lot of walking, and even a little tennis, I seem to have adapted, although I am kind of sluggish. The fewer transfusions the better, so they let me go because I feel OK. My white count is normal, 6.6, and my potassium and sodium are about where they should be, although the sodium is still low. I guess I need to eat more potato chips.

For a reference point, normal platelets range from 150-450, and normal hematocrit for women ranges from 34.9-44.5

Those platelets were pretty low for running around playing tennis. It's a good thing my friend Donna didn't know or else she wouldn't have let me.

The comments struck me more than the low counts, though, from back in the day when people commented on the blog instead of on Facebook.

PJ (aka Patricia), Ann and Dori, fellow leukemia patients who also received more than one transplant, congratulated me, as they had done on the date of my fourth transplant eight years ago today. We did that for each other when reporting our successes via our respective blogs. We also commiserated and even darkly joked when things went wrong.

Now of course they are all gone, and while I think of them often, I do so even more on anniversaries like this one.

Patricia and Dori had the same nasty disease as I had: acute myeloid leukemia, or AML. Ann had an even more toxic kind but did not die from that. Cause of death was a squamous cell cancer that appeared on her tongue and then spread through her body. This is where luck, good and bad, comes in. I remember clearly lying on my couch and talking by phone to Ann and Chris in New Orleans, telling them what it was like to have the same procedure that Ann would be having, a scoop taken out of my tongue. Except a dental surgeon found mine when it was pre-cancerous because of the "good luck" of needing to have 12 teeth removed. (One or two at a time over a period of a couple of years.) The surgery on my tongue hurt like HELL for a long time. But that was that, and now I only go once a year to see the head and neck oncologist.

I especially miss Patricia, because we lived near enough to see each other and become real friends. We had so many similarities, we even called each other doppelgangers. (Three kids, runners, dog-lovers, Dana-Farber, AML...) We paralleled each other until her death in 2014. She had such a terrible time in the end.

I think if I got morose, Patricia would tell me to snap out of it, because that's the sense of humor she had. So I'm going to look back at the date without tears.

PJ, aka Patricia Jempty,
Jan. 23, 1954-June28, 2014

Jan. 31, 2009: New stem cells, signed, sealed, delivered

If you want to read the linked post, you'll see how I waited with anticipation and nervousness for the cells to arrive and how my nurse, Helen, monitored me closely while the stem cells flowed out of an IV bag into my catheter. I usually tell people that the infusion of the stem cells is not a big deal. It wasn't for the first three, but I guess I blocked out what happened near the end of the fourth.

I started shaking vigorously. My heart rate skyrocketed. Helen gave me 25 mg. of Demerol, which didn’t stop the shakes. She paged a doctor who rushed in. I got another dose of Demerol, more Benadryl, hydrocortisone and some Tylenol. They put me on oxygen.  Everything calmed down in about half an hour, and, after soaking through two hospital gowns, I finally got a few hours sleep. 

Today I am a little puffy and bleary-eyed, and I’m starting to feel the beginning of the predicted mouth sores. Somehow, my platelets went up overnight on their own, from about 10 to about 40, so I don’t need any “products” today. I think I will take that as a good omen.

Diane brought me a birthday present yesterday: a card with a pop-up bouquet and a bag filled with the other kind of product that I now need after my transplant. It contained shampoo, conditioner, lotion, body wash and lip gloss, all in pretty perk-me-up colors. (After transplant, you’re supposed to start with everything clean and new and throw out old products.) On the card, she wrote, “Here’s to a wonderful and healthy life with your new mystery donor!”

Last night, as the evening weirdness settled in on me, Diane reminded me, “You’re getting another shot at a whole new life. It’s great. It’s the miracle of modern science.”

So here's to modern science; and to my donor, Denise; and to Dana-Farber, and to everyone who helped me get through it. Here's to luck.

And here's to PJ, who commented at the end of that blog post:

"Sounds like your body had a wild party last night. My heart rate went up just reading your post.
Here's to the mahvelous miraculous new you."

If you want to learn about how to become a donor to save the life of a person with blood cancer, go to BeTheMatch, formerly called the National Bone Marrow Donor Registry.

A baby visit and a (re) birthday

Musician-in-the-making

A little experiment with my blood pressure monitor shows the effect that reading about politics, and the opposite, sitting quietly, has on me  (and probably on some others).

 When I took it after glancing at all the bad news on Twitter this morning, it was 154/77. I took it about five minutes later after closing the cover on my laptop and sitting for about five minutes, and it was 103/78. I don't know what to make of it when the upper number is high and the lower number is normal, but in any case in looking at the top number I could see the difference.

I'm sure it was fine on Friday because I had such a good time when Nell and Ben came to visit. We took a little walk with Maddie, but it was too cold and windy, so we had lunch and played inside. She enjoyed sitting at the piano that my parents gave Ben on a day that seems like yesterday. I sent it home with them to go with the other instruments in her "band."

She also liked "talking" on two old remotes. I'm not sure why I'm keeping them. Maybe for nostalgia because I don't like the new system with the blue talk-to-me button. Or because they're good pretend phones.

As I've gotten back to exercising, I can feel the repercussions of the three-week gap the most in yoga.

On Thursday after class, I knew that my arms would soon be sore from doing down dog and plank. On Saturday as soon as we did the first pose, I realized how sore my forearms were. I thought, maybe I should leave. But of course I didn't, instead doing child's pose when I needed a break.

I also did legs up the wall when they did box pose for handstand preparation. Way back before leukemia, I had been able to do this with help from my teacher, Erin, who had me put a strap around my forearms to provide a sense of stability.

I am better at acknowledging without judgment "that was then, this is now" with yoga than I am with tennis or running, when I sometimes compare what I used to be able to do with what I can do now. The metaphor of the yoga class is one of sticking around and doing something that's good enough for that moment even if not as advanced as before.

In any case, today at tennis I hit some pretty good net shots and had some long rallies. This is a lot better than I could do eight years ago, when I could only walk around my hospital room or the nurses' station or sit in my chair or lie in my bed while awaiting my new stem cells.

They arrived eight years ago tomorrow.

Of high blood pressure and gratitude

Reading Underground Railroad at Dana-Farber
during light treatment in order to avoid the news

A post that I came across in a blog-sharing group struck me as something helpful to share. I want to get to the part about going on blood pressure medication and not wanting to, and how it got to be this way, but first, an interview with Maya Angelou and various sources on how keeping a gratitude journal is a key ingredient to happiness.

This could be especially helpful these days when the irrational behavior of a certain individual can threaten our own equilibrium.

I did something like this a while back, sending to a friend, and a friend sending to me, five things we were grateful for on each day. It was great for a while but was hard to keep up. This one seems easier. Just three things.

The end of Avenue Q when we saw it way back when concluded with an applause-generating phrase, George Bush is only for now, which was changed when he left office. You could substitute Donald Trump is only for now, but that might not have much of a calming effect because he and his minions are so terrifying.

I would put him third on a list of the reasons for my high blood pressure.

1. It started with the Mohs surgery three weeks ago, and with the knowledge that they were going to remove a larger than usual squamous cell cancer from my ankle and cut a slice out of my stomach, while I was awake, to use as a graft in the hole. A couple more pieces of me chipped away. As I wrote, it wasn't as bad as the anticipation. But the pain was intense enough for about a week that I took double the usual dose of pain medication.

2. My routine was disrupted, the source of my endorphins gone. I was unable to play tennis or go to yoga or even walk very far. The doctor said to limit it to 20 minutes, just for walking the dog, not an exercise walk. I did that gingerly. I also did a little stretching and tried to meditate, but it was hard because I was either in pain or falling asleep from the drugs.

3. Donald Trump. Nuf said.

After the high reading at the Mohs center and another at a local doctor's office, both of which seemed to be variations of White Coat Syndrome, I got a prescription for Losartan (and instructions to drink less coffee.)  But when I took out my old blood pressure monitor the next day and the numbers were normal again, Melissa said it was OK not to take the pill. She said to monitor it, though.

I then made the mistake of sitting at the computer for a long time, writing with breaks to read all sorts of bad news, and remembering that I hadn't taken a reading that day. I should have sat quietly before I did it, but I didn't, and it was 202 over 118. I usually run normal (120 over 80 or so) or even lower.

I paged Melissa, who always gets back to me quickly. (Thank goodness for Melissa, and for caregivers like her.) I asked her if I was having a heart attack. But I wasn't having chest pains, so she said to take a pill and relax and call her in an hour. By then it was back to normal. But she said that after three high readings I should take the pill.

We are going to reevaluate after I am back to my routine. I started with tennis Monday and yesterday.

The nurses at ECP yesterday said to pay attention and make sure it doesn't go too low. This morning it was lower than usual, 106/75. I texted the friend who I've been discussing this with, "Better drink some coffee." We had also been discussing the impact of salt, and she texted back, "Or eat salami."

Today, it was good to get back to yoga. I took it easy, knowing how sore my arms would be if I did every down dog and plank. I left the Northampton Y feeling calmer. But in the car I turned on NPR and listened to a story about the Mexican president canceling his US trip due to Trump's insane claim that Mexico is going to pay us back after we build the stupid wall. I fumed. I do not want my tax dollars to go to that wall.

I definitely wasn't going to take my blood pressure after that.

That gratitude journal could be a wall between sanity and insanity. Tomorrow I will start by writing that a certain big sweetie is bring a little sweetie to South Hadley for lunch.

Boston checkup, Boston Women's March all good

I really didn't know until the last minute if I could go to the Boston Women's March, getting the OK on Friday, just a day before I drove with three friends and packed in with a crowd estimated to be up to 175,000, quite a bit higher than the 70,000 expected.

Like it was for others, it was a major antidepressant, an energizer, after the gloomy Friday of Inauguration Day. Fittingly, the sun came out while we were squished onto the outskirts of the Boston Common, straining to hear the speakers but exalting in the mood and messages against a certain person's divisive agenda.

With Sue, Carol and Len

I had been worried earlier in the week that the graft on my ankle wasn't healing properly. It hurt a little more, not less, and as I said previously, it looked pretty bad to me. I sent a photo to the Mohs office and didn't hear back until Friday morning that I would have an appointment that day, too late to get a ride.

I finished a story that I was writing for HCC and hopped into the car, heading to Jamaica Plain and the Mohs and Dermatologic Surgery Center. Normally I would listen to NPR, but I knew it wasn't safe because the inauguration was on. I listened to some music and rode in silence (which a child of mine considers to be a disordered behavior). I checked in at the exact moment when I heard, "Donald J. Trump is now President of the United States."

Then I listened to part of his horrible American Carnage Speech and decided that riding in silence would have been better.

At the Mohs center, a doctor who said the spot on my ankle looked just the way it was supposed to look. I asked about going to Boston and she said that I should and that she was going to Washington.

That was good news, but I wouldn't have minded if they told me over the phone. I guess it was better to see it in person. In any case, I got a great club sandwich at a cool place in Jamaica Plain, and, a reporter still at heart, managed to eat it on the way home without creating a mess.

The next day was the best. We left bright and early to park at Diane and David's house and walk down the block to the T stop to get the Green Line into Boston. Little did we know that people would have already packed the trains. One after another stopped, only to open the doors onto people jammed in. After about an hour of this, we were lucky to get an Uber to get us as close to the Common as possible. Our march consisted of walking there because once at the rally, we couldn't get out to do the formal march. But that was OK because we got to hear the speakers' determination, such as Attorney General Maura Healey telling Trump that if he takes away women's rights, "We'll see you in court." And we saw a lot of great signs. The mood was festive and determined.


A couple of times, my friends helped me find a corner of a bench to rest on. People were very kind, asking if I needed food or anything. Though we couldn't get to the marchers' route, we managed to push our way out of the crowd and "march" to the T, which was free for the day.

It was invigorating and tiring. Sounds oxymoronic, but you can be both at once.

Back home, I lay down on the couch and talked to my cousin, who had marched in New York. She said it was all over TV.  I turned news on after a long blackout and was additionally energized by watching marches all around the world. It is little hard to figure out were to go from here. Information and ideas for action are flowing in from everywhere.

Today,  David Brooks missed the mark by wring that the marches can never be an effective opposition to Trump. He said they focused on the wrong issues: reproductive rights, equal pay, affordable health care, action on climate change. This makes no sense because those are all important issues.

If you think too hard about it you can lose the glow and get depressed all over again. Hopefully this 10 Actions for the First 100 Days will yield results.

The resistance, the ankle and the dog story

The Gordon group

I thought the graft on my ankle was healing well, but now I'm not so sure.

It's been a week with just some twinges, but I'm concerned it's hurting more and not less. I called the Mohs office in Boston and left a message but did not hear back. I did talk to Melissa and sent her and my regular dermatologist a gross photo. I hope the spot isn't infected.

I haven't done anything to irritate it. I walked Maddie just a short way (have dog, must walk) and since Jim and Jane are away, that's what I need to do. Last night I took her on the leash in the dark because I don't like how she runs off into the woods behind my house. It was slippery so I decided it was not a good idea and turned back. I let her off near my door and she dashed into the woods and disappeared. So there I was in the rain, blowing the whistle that is supposed to make her come back (per trainer) and jiggling a can of dog biscuits. Finally she trotted out. Reminiscent of the panic that sets in when you "lose" a child in a store and the child turns up behind you.

Michael Gordon photo

Yesterday I finished a story for the AKC's Family Dog magazine on the ways in which the kids and I helped Maddie recover from her car accident and the way she helped me, and by extension the family, heal after my relapse, and how she continues to work her dog magic (except when disappearing).

I enjoyed working with Michael Gordon, my former colleague and so-called cousin, who took the photos. It's like being back at work (without the stress) and the second time we have done freelance work together.

I haven't gone to yoga or done any exercise, per doctor's orders, but I did go to a restorative yoga class at Erin's tonight. It is no way stresses anything; this is not the textbook description but it is basically a lot of lying around. I hope the relaxation will extend through the inauguration. I don't plan to look at or listen to it but the fact of it is unavoidable.

A friend said that I've been through so much I shouldn't get myself sick about it but since I already am, the only thing to do is to try to be active in the opposition, or, as it is being called, the resistance. It is hard not to get sick all over again when reading about hacking, Russians, the ACA, and on and on.

I googled Donald Trump resistance just to see what came up, and sure enough, there is a page, the DJT Resistance, showing the logos of Trump-supporting companies to boycott. And of course a Facebook page.

On Sunday I enjoyed having brunch with like-minded women in an action group. We discussed the marches and other plans and ideas. I had briefly thought of going to Washington for the Women's March but changed my focus to Boston.

When I jokingly said I might need a wheelchair, two who are going said no problem!

Well I'm not going to do that. I asked Melissa today if she thought I could go. She said that since it will only be four days until the date I can exercise (tennis here I come), I should be able to go,  but maybe not for the whole thing. That was actually an idea that I had had. It could work because we plan to park at Diane and David's and so I could just hop on the T early and go back and wait for the others.

That is, of course, pending cooperation from my ankle. Toes crossed.

Doing a three-way for the first time

Something to cheer me up

I didn't know I could do a three-way until the nice lady told me last week.

The suspense is killing you, right?

Every time I have had to go between two locations in Boston, unless I drive myself, I take rides provided by MART to and from Boston and then The Ride in and around the city. Sometimes this has not worked out well.

Today's three-way with one MART driver went like this: South Hadley to Faulkner Hospital in Jamaica Plain to get my stitches removed and the spot on my ankle evaluated, then the same driver to Dana-Farber for my ECP (the blood behavior modification) and then three hours later, the same company back home.

The stitches on my stomach came out fine. At first I didn't want to look at the graft on my ankle but ultimately I did because I will be living with it. It looks like a crater about the size of a half dollar, with black dissolvable stitches around the circumference. Not pretty. I'm supposed to stay off it for another two weeks. If I don't, the graft will fall out.

This makes me unhappy. I took Maddie for a little walk yesterday but had the intuition that I shouldn't go far. It was about a half an hour, which is what the surgeon today told me my limit should be. And no walking to exercise. Or yoga and of course not tennis.

The world and our country at this perilous time have way worse problems than an antsy person with a hole in her ankle who is unhappy about not being able to exercise. But it is my outlet and my routine and without it I feel at best grumpy and at worst depressed.

I bought a little something extra to cheer myself up when I stopped at the dining area on the third floor at the Yawkey Center before going to ECP.  Not the best thing to do when you're not exercising, but it was only a little something.

I like to think of my father saying, "This too shall pass."

Spot is gone; pain and itching are on

Post-surgical fashion statement

Today I am focusing my investigative journalism efforts on what to do if your stitches are itchy.

The fact that the itchiness is a sign of healing does not make it easier to stand. On Wednesday and Thursday after my Mohs surgery, pain was my biggest problem. Now I have less pain although still some at the area on my ankle where the surgeon removed the squamous cell cancer and put on a skin graft to fill the hole in. But the area on my stomach where they took the skin for the graft is itching like CRAZY. Now I understand why they put an ice pack in with the materials needed to change the dressing. The ice pack helps somewhat. I took some Benadryl last night and might take some more.

The ice pack fit into my sweatshirt pocket. I wore it in there for a while because it is right over the spot. Then it lost its cold and I put it in the freezer to see if it would reactivate, but I'm not sure it will work. Meanwhile I have taken a larger freezer pack and tied it around my waist with my scarf. It is hard to concentrate on anything else.

The fashion statement might equal the one I made when wearing one of David's Teva sandals home because my boot didn't fit over the bandage on my ankle. Diane lent me a pair of socks because my feet were cold in the ones I had brought and also because it was hard to fit mine over the bandage. Joe came home to have pizza with me last night, make dinner tonight and help take care of Maddie. It takes a village.

When the nurse at the Mohs center at Faulkner Hospital took my blood pressure on Wednesday, it was 170-something over 90-something. She said it might be a good idea for me to take something. I agreed it was as good a time as any for me to take one of the Ativan I had brought. So while they were getting the room ready, that is what I did.

I have had at least 10 of these surgeries and never got so anxious. It was the thing about the larger size and the graft.

It took a while for them to draw their shapes on me: one on the ankle, one on my stomach, and one on my left hand. Dr. Schmults, who is director of the Mohs Center and who is really nice, said the one on my left hand is too small to treat. She recommended that I treat that and the backs of both of my hands with Effudex, a chemotherapy cream, saying the only way for it to work is to wrap my hands in Saran wrap after I put the cream on, every night for three weeks.

Since I have mentioned this frequently lately, I probably should repeat what Mohs surgery is all about. According to the definition on the Faulkner Hospital website: Mohs surgery, a form of skin cancer removal in which the borders are examined by the surgeon microscopically while the patient waits, boasts a remarkable 99% cure rate for most basal and squamous cell skin cancers as well as a high cure rate for other rare forms of skin cancer.  

A doctor, Frederick Mohs, developed it in the 1930s. If the margins are not clear upon first examination, they take a little more, examine again, and so on until it is all gone. I asked once and learned that sometimes it can take quite a few times to get it all. Only once did I need a second pass. This one came off, as did all but one, on the first try.

During the prep work, I talked to one of the residents. He was impressed by my four bone marrow transplants. They always ask, four? We talked about it some more while he was outlining the spot for the graft. Dr. Schmults suggested a little change in the shape. I had an odd feeling of being the material for a coloring project. I asked if he could still concentrate while I talked, and he said yes, he could. Classical music filtered in while they worked. My appointment was at 1 and I was done at about 5. Some of this was waiting, some was drawing on me, some was getting numbed up with a lot of needles, and some was the actual procedure.

Diane picked me up. I had a nice dinner with her and David and enjoyed what Diane knew would be the best medicine for me, a rich piece of chocolate cake.

On my drive in, I had posted on Facebook about feeling anxious. I appreciated the support that people gave me. As we all know, FB has its downsides, but it is great when you need a virtual helping hand. It was also helpful when, at 1:38 a.m., I wrote that the Tylenol and codeine that Dr. Schmults had prescribed wasn't working. The pain was bringing tears to my eyes. I needed to take an oxycodone, but I didn't want to wake my sister to get something for me to eat and I didn't know if the clementine and potato chips I had in my room were adequate. Somebody is always up. My friend Nan Imbesi replied that my snack should be substantial enough. So I had my snack and my medicine and drifted back to sleep.

I haven't complained about my drivers recently. That's because I have had some good luck lately. I had the same nice driver in and back. When I mentioned to him, as I have to some others, that many of the other drivers have been, um, less than polite, he said he had heard a lot of complaints. We agreed that it doesn't make too much sense because it doesn't take much to be nice, especially when you are driving people to medical appointments.

I go back Wednesday to get the stitches removed. That will be a relief.

Good show, good run, good visit to my hometown

Scene from "Falsettos" on Broadway, with Andrew Rannells in hospital bed

Tradition, tradition...

Facebook was kind enough to send me a memory from the New York visit that Katie and I had two years ago when we saw the wonderful and bubbly "On the Town." It started almost the same way as our trip earlier this week:

"Drove in on Saturday and got a spot good for the two days we needed. Happy feeling." Just replace Saturday with Monday and you get the same thing.

This year's winter pick, "Falsettos," was a different kind of show. A comedy and a drama at once, it is a revival of a 1992 play by William Finn and James Lapine, the creators of Spelling Bee, which originated in Great Barrington.

The play about two gay Jewish men and their extended family starts out at a fast, funny clip, then takes a turn in the second act as one gets the mysterious illness afflicting gay men at the time of the second act, 1981. Writing in the New York Times, Charles Isherwood called it "exhilarating and devastating." You could hear a lot of laughter at the beginning and a lot of sniffling at the end.

I would recommend seeing it but the limited run ends in a week. Check out this feature in Playbill.com to hear a medley. It was interesting to see Andrew Rannells, who we saw as the Elder Price in The Book of Mormon, in the more nuanced role of Whizzer to Christian Borle's Marvin.

Nice place for a run

It was our second year staying at an Airbnb in the Lower East Side. With its scattering of overgrown community gardens, it is a different world. Katie drove in all the way, and, as an honorary New Yorker, successfully turned on her parking radar and found a spot in walking distance of our place on 9th street off Avenue C.

Due to street cleaning from 11 a.m. to 12:30 on Tuesday, someone would have to sit in the car and move out for the street cleaner, a New York routine in which I delight. Then the spot would be "good for tomorrow," meaning that we wouldn't have to sit in it or move it on Wednesday before our checkout.

Monday night after unpacking, we wandered around in some of my old stomping grounds in the West Village, ate dinner at a tapas restaurant and found dessert at a nearby patisserie. Being an old(er) person, the next day I woke up early and went for a run. Our place was conveniently located across the street from 9th Street Espresso, so I got up and got a coffee before heading the couple of blocks over to East River Park.

After doing the hilly Hot Chocolate 5K last month, I had an easy time jogging under the Williamsburg Bridge about three miles on the flat pathway with the beautiful views of the river. I feel so much better about everything when I can run without pain.

I made it to the car on time and got so engrossed in talking to a friend on the phone that I didn't notice that the street cleaner had pulled up behind me. The driver started honking. The idea is to pull out, wait for the street cleaner to pass, and then back in. But a car had pulled even with me and I couldn't get back in. Parking panic ensued. I zoomed around the block and got back in the space. But you still have to wait the whole time, so Katie came and took my place while I took a shower.

We had what my father called "free time" before meeting for dinner and going to the show. We were a little disappointed afterwards that Rannells didn't come to the stage door with some of the other performers, but we got over it with cheesecake afterwards.