Thoughts on being a (sort of) eleven year old

Toasting my donor 

We tend to like the number one, because it is the first of something, and after that, we like round numbers. We celebrate the fifth anniversary of something or the 10^th. At the paper, if someone sent in a press release about the “first annual” such and such, it was one of my pet peeves. I would change it to the first, because how did they know if it was annual yet?

The first anniversary of my stem cell transplant (s) was big. My first re-birthday. I did it twice. (For the other two out of four transplants, I didn’t make it past six months.) I had made it a year! Most restrictions were lifted. I could go places, eat strawberries, sit inside a restaurant. 

Even though two isn’t the round number favored in journalism circles, it’s a big one in stem cell transplant world. It’s when the cancer is unlikely to return. I didn’t make a big deal out of two years, not wanting to jinx myself. I did it twice. I think I might have had coffee with friends. 

Five years was the big deal. It was when I could say I was cured. (Though I never would actually say it myself.) My words: “They say I’m cured.” Doctors don't always say it this way, preferring to maybe cover their bases with “You’re no more likely to get leukemia than the rest of the population. "All the kids were around. We went out to Mulino’s, a favorite restaurant in Northampton, for a celebration complete with birthday cake and the number five. The waitress sang along. Maybe she wondered about the number five, maybe she didn’t even notice. 

A photo popped up on Facebook last month of my seventh “re-birthday,” showing my memory from four years ago of having a cake with Ben and Joe. I assume Katie was in Minnesota. I think we’ve done something on or around the date every year. 

Seventh re-birthday with Ben and Joe

Ten years was obviously super big. I don’t remember what we did, but we did something. Eleven, well, what can I say? It kind of slipped through the cracks.

A few weeks ago I thought about the approach of the 11^th one. The date: January 30^th. For a while we thought it was the 31^st, but Denise, my donor, set the record straight. She should know. We were all in a fog, so being off by a day is understandable. 

Then came the date, Jan. 30^th, 2020. My 11^th re-birthday. I got an email from Denise, with the subject line, Happy Re-birthday, and reading, “I can’t believe it’s been 11 years.  Here’s to many more!” 

It was strange to not have a plan. 

But wait, I did have a plan, just not a plan with the kids.

My friend Diane and I had a coffee date at Barnes and Noble. That’s where we frequently meet. We sat next to each other at my first job at a daily newspaper, at the Transcript-Telegram, aka the T-T, in Holyoke, and then again at the Union-News/Sunday Republican, which morphed into The Republican. We are sisters of the newspaper world. So in a way I was seeing a relative.

Our birthdays are close to each other, mine in August and hers in September. We had already bought each other our birthday coffee. But when we went up to get our coffee, I said to the barista, “It’s my birthday!”

I wasn’t fishing for a free coffee. I just felt like saying it.

Diane said she already bought me my birthday coffee. I explained that it was my stem cell birthday.

“Well, that’s better,” she said. She got me my “re-birthday” coffee. I bought my own chocolate chip cookie.

She had already left when I realized it would be nice to get a photo. A bookstore staffer said she would be happy to do it. I mentioned the occasion and she said she was on the (bone marrow donor) registry but hadn’t been asked to donate. I thanked her and said you never know when a match might come up. 

I took a deep dive and read my post from Jan. 31, 2009, headlined, “New stem cells signed, sealed, delivered.” I can still picture the wild ride I had in the little room. After I got the cells, I reacted, like so: “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.”

The night before, when I had gotten anxious, I wrote that Diane reminded me,“ You’re getting another shot at a whole new life. It’s great. It’s the miracle of modern science.” 

And she was right.

Last week when I told someone about the occasion, I said, "I'm 11 years old and a walking side effect!"

A couple of things to note.

1. I'm walking, which is more than I could say for a couple of months in bed, in the hospital, after that transplant.

2. After everything I've been through, the four stem cell transplants, the graft vs. host disease, the neuropathy, the 13 teeth lost, and the skin cancer that is partially a result of the treatment, I still have my sense of humor. Actually my sense of humor may even be better, because I need it.

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.

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 100^th 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. 

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.

Goodbye Dori

The Internet provides immediate closeness to people with this terrible disease. You don't have to get to a support group or plan meetings. Click and you have found a new kindred spirit.

That's the way it was with Dori Brown, who died Tuesday of AML, the same kind of leukemia that I had. We never met or even talked, but thanks to the words of husband Jim on his blog Run for Dori, I felt like I knew her. I also felt like a knew Jim. He is a runner who participated in races benefiting the Leukemia and Lymphoma Society and other organizations seeking a cure for blood cancers, and he drew attention to the need for more people to become bone marrow donors.

He chronicled in words and pictures Dori's four-year battle with leukemia, letting us into their life as parents to two children, writing about the effects on the kids, and as an extra benefit to runners, taking us with him on his runs on the good days and the bad days and speaking candidly about how they helped him, or didn't, depending on the day. He gave a full picture of a family going through the leukemia journey.

Dori's smile was always with us, most often in photos showing her having fun with her family. Jim's writing was expressive yet never excessive, realistic and informative and showed how this couple navigated the ups and downs with grace.

I loved it when he wrote after she came home from the hospital for the last time that she was the most beautiful cancer patient he had ever seen. She seemed tremendously warm and loving, like someone who  really enjoyed and appreciated life. And without ever being maudlin, Jim wrote about how much he loved her. You could also see how much her kids, Will and Kathryn, loved her, and you could see how they have the strength to be OK.

I really thought Dori was going to make it. When I saw Jim's latest headline, "Rest in Peace," I was floored. And there was Dori's smiling face. I'll miss her, and him too. It would be understandable if he signed off from the blog, but I hope he continues writing for a while so that his big support group can keep in touch.

Should bone marrow donors be compensated?

I've been thinking about an Op-Ed piece in Thursday's New York Times supporting some kind of compensation for bone marrow donors. The writer takes issue with the structure of a 1984 law making it illegal to sell kidneys, because the organ is irreplaceable and a market in kidneys could spur donors to make a choice that could damage his or her own health.

The law excludes blood and sperm, which replenish themselves, but not bone marrow, which does the same. The writer of the Op Ed piece, a lawyer, has filed a constitutional challenge against the marrow prohibition, seeking to allow some small compensation for donors.

The hope is to get more to donate; according to the piece, "Only 7 in 10 Caucasian patients who need a donor find one. For African-Americans, the odds are longer still; only one in four do. Tens of thousands of Americans have died for lack of a donor."

The compensation includes a $3,000 scholarship or a donation to a favorite charity. I don't think it's money that compels these generous souls to donate; however, this isn't as direct as straight cash, so maybe they'd like it.

_____________________________

I haven't had any news recently, which I guess is good. It's been gray, cold and windy. I continue to walk the dog each day on the icy path. I know I should go early before it gets colder, but I procrastinate until afternoon because I don't feel like going out. Meryl and Deb have each rescued me. I walk a little and then I walk to their house, where I get warmed up with hot chocolate or coffee and cookies. Then they drive me home. Barry also came over one day and Mary another; we walked and then had something to eat. Good conversation, good friends and of course good coffee and cookies warmed me right up.

I've kind of been hibernating, which is the case for many in this area, except they have to go to work and I don't have the distraction, although you'd never know how busy you can get filling up the day. I'm going to try to come up with a few more things to do. Also, at almost a year "out," I can soon converse with my donor by name. We've been in touch through censored mail, but we can exchange names and I guess pictures after a year, which is Jan. 31. Wow. That should be interesting!