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.

Wandering around Wellfleet, 'enjoying' a little fall

I was skeptical about riding the little Birdy folding bike,which looks like it is better suited to a circus than to a road. With its long neck, it brings to mind an ostrich. But riding it in Wellfleet, I was pleasantly surprised at the smooth ride and how much easier it was to go up a hill on it than it is on my regular bike.

Uncle Tim's Bridge

I haven’t ridden a bike since the fall, and I only went to spinning a couple of times, so I wasn't sure how I would do. Not that I wasn’t out of breath going up hills, but it was easier than I expected. I knew the center of gravity was different than on my bike so I didn’t want to let loose going down hills. Next time I’ll be a little less cautious so that I can get the benefit of that feeling of flying. But I didn’t want to fly over the handlebars.

We rode for about an hour. At the end when we got to the dirt road leading to the Airbnb, I figured I should get off and walk. But before I had a chance to do it, I got caught up in a vine reaching out from the bushes. I toppled backwards onto a cushion of vinca. The bike fell the other way. It was such a short distance, and the landing so soft, that I sat there and laughed. Later, I told Katie that the vine had grabbed me and pulled me in.

Birdy biker

With effort, I pulled the bike up and held onto it while I pulled myself up. There were just a few pinpricks of blood on my shin. I walked down to the car, where Jeff was putting the other bike away. He said when he looked back, I seemed to have disappeared! We agreed that it was a step up from last year, when my heavier bike fell on me and I needed 12 stitches. I’m making progress, from stitches to a dribble of blood. He said it would be nice to have a bike ride with no accident at all. I had been so careful during the riding part and had gone and had a mini-accident when I wasn’t even riding.

My first reaction was to want to call my friend Patricia, aka PJ. We always

Vine sticking out and site of topple

enjoyed comparing our falls. We made each other laugh. Mostly talking to myself, I said how how it was hard to understand what had happened. One day we were comparing notes about our similar lives, our diagnoses of acute myeloid leukemia, our multiple bone marrow transplants, and the next day she was dying.

I’m not sure when they stopped using bone marrow transplant and started saying stem cell transplant. They are the same thing. When I had mine, I was a “BMT” patient. It sounded like a subway line. Probably because in the older days, they got the stem cells directly from the bone marrow and now they get them peripherally, out of the blood stream.

On our first day in Wellfleet, when we went down to the beach, I did a walk/jog along the water and  pondered the difference between the way I see the world now as compared to the four times that I was a baby, after each stem cell transplant. 

The misty day lent itself to introspection. I went up ahead and wrote in the notes section of my phone. When I read it later I was going to edit it because it seemed a little overblown. But I let it be, because it captured a moment.

Trying to recapture the gift of reentering the world after stem cell transplant and seeing everything as though it’s new such as the water lapping at my feet as I walk along the Atlantic Ocean.

It’s like the joy of a child , for that is what I was. I can’t go back nor do I want to but I can try to stop the mental chatter that runs in circles around unanswerable questions or flits around the edges of the mundane. Should I work on my essay, should I write a blog post, should I answer emails, should I wear contacts to the wedding.... Switch.

Like you tell your doubles partner only you’re telling yourself. Paw prints and footsteps in the sand. Waves cresting. Waves crashing. Tide coming in. My beach speed is in between a jog and a walk. I could go a long ways but behind me I seem to have lost my friend in the fog. Sit down to wait. Don’t want to be like Scarlet shouting Ashley, Ashley, through the mist. Trying to think of words to describe the smell down at the beach. Something you wish you could bottle. Brackish.

We did one of my favorite walks, over Uncle Tim's Bridge and the "bench book" where visitors write how much they love the peaceful spot.

Yesterday when walking around Provincetown in intermittent rain, we stopped into the Provincetown Library to see what was with all the talk about the boat in the library. I didn't expect it to be such a big boat. The half-scale model of the schooner Rose Dorothea has a 66’6″ length and a 12’6″ beam and takes up a good part of the second floor. I almost forgot to mention one of the important things, which was getting a good, strong, cup of coffee after lunch, and taking it to the library.

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."

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 little bit of PTSD can go a long way

Illustration from Skincancer.net

I'm trying not to duplicate what I write in the blog and what I write for the skin cancer and blood cancer platforms of Health Union. So, I probably didn't share on the blog how I had cryosurgery that made me cry.  If you go to the link you can read all about it. Or not.

I got the biggest blisters on my hands and on the top of my nose. Good thing it wasn't date night. I knew I shouldn't have done it but I popped a few of them. They were ballooning and just asking for it. I left one alone. Guess what? The one that I left alone healed faster. I also wrote one about the problem of skin picking.

The other night I had a nightmare that conjoined some of my trauma and anxiety. Also I realized that something from the news had seeped in.

I dreamt that I was in a bed in a hospital room where relatives were sitting. My doctor said he was going to stick a needle in me and do a major procedure. I would go under. If I came out on the other side, I would be healed. But I might not make it through the night. He said someone should stay with me all night. But then my bed was in the hall and I didn't know where people would sit. Analysis: Stem cell transplant, coma, touch-and-go night when they really weren't sure I would make it. And the thing about the bed in the hall: those melodramatic ads against Question 1, the nurse-patient limits, which featured patients perishing in the hall because nurses had been pulled off to meet requirements in other places. (It failed.)

In another part of the night, I dreamt I forgot my tennis racquet and had to play with something that had a little handle and a brush at the end. I tried to do it but then realized I couldn't possibly hold onto it. The scene cut to a match. My opponent was bouncing around. She looked pretty good. I said I realized I couldn't play with the racquet. Then I realized mine was in the car. She said to go ahead and get it. I said but then I would be late to the match and she said it was OK, we could start and one-all, and she wasn't good for more than one set anyway.

I ran out to get my racquet but then realized my keys were locked in a room. Then I couldn't remember exactly where the room was. Oy.

I was still in transit when I woke up. I guess the good news was that my opponent was being nice about it.

I also wrote a piece about PTSD but it hasn't been published yet. When I did a little research, I found a story that stated many cancer survivors suffer from PTSD.

The National Cancer Institute calls it Post Traumatic Stress, or PTS. Apparently it is not as severe but it can rear its head at any time. Such as in nightmares that go back to the time of crisis.

After that nightmare I woke up feeling blue. I don't know why the saying is "feeling blue." Blue is one of my favorite colors. It should be "feeling gray."

In any case there was nothing much to do about it except to go on with my day.

'Visiting' parents' bedroom, chewing over dietary recommendations

I dreamt I was in my parents' bedroom at 1200 Fifth Ave.

My father's bed was made, but you could see he hadn't slept in it. I looked over at his nightstand  and saw the framed black and white photo of his parents. I knew he was gone.

But my mother's bed looked recently occupied. The pale blue coverlet was on top. She hadn't covered it with her bedspread. So I knew she was around. But where? I couldn't find her.

It was part distressing, part comforting, kind of dissonant.

The day before I had replied to a leukemia patient wanting to know what a stem cell transplant was like. I said the infusion of donor cells itself was no big deal. It was just like getting blood and platelets. I didn't get into how sick you get during chemotherapy, but my dream picked it up.

That night I dreamt I didn't feel well. Someone came in and took my temperature. It was 105. Just like it really was on the night that my mother called every hour or so and the nurse assured her that she had wrapped me in cold sheets and I would be fine.

I also dreamt I had such a bad toothache that I needed to find an emergency dentist working in a hospital, but I had no idea how to find that person.

Today I go to the dentist to find out his plan for the chipped tooth.

On Sunday I went to see a nutritionist (yes, she works on Sunday.)

She said I should cut out sugar and dairy and that despite all the good stuff I put into it, I put in so much crap that it depletes my body of the good nutrients.

She said that the inflammation that I have from my graft vs. host disease of the skin would calm down if I cut out the sugar. She is a fan of maple syrup, though.

She said that most likely, sugar gave me cancer.

If you look that up, every other post says yes it does, no it doesn't.

I think my mistake was in telling her that after tennis, I go to Breezy Acres and get coffee cake.

She said I eat too much fruit and not enough vegetables.

I remember going through something like this a long time ago, before cancer, and telling my mother I was going to cut the sugar. She said please don't cut out the fruit, it has so many good things in it.

At Atlantic Beach, we loaded up with fruit from the fruit truck. It's part of my culture.

The nutritionist probably has a point about the coffee cake. I went one whole day without it, and I survived.

But seriously, it is summer and I'm going to keep eating local fruit. I will make an effort to cut back on it though, and when I go to get tomatoes or corn maybe I'll have to go to Dave's, or if I go to Evelyn's, avert my eyes from the coffee cake, but that might not work because the smell there is so wonderful.

Or maybe I'll cut back and get one sliver to have with my afternoon coffee, which I am supposed to cut out but that is not going to happen because then I won't be able to write.

I think she meant to cut it ALL out.

She is not a fan of the yogurt I have been eating in large quantities. I thought I was doing something good. It's very confusing.

I got some almond "milk," which might not be called milk for too long.

I guess I can try for a few weeks to adhere to it as much as possible, but in the back of my head, I hear my father saying, "Everything in moderation." He isn't saying, "Cut out all the fun stuff."

Also, I'm going to Wisconsin and I need to eat cheese.

It's summer, so what about ice cream? Maybe one scoop instead of two?

It can get old to call everything a First World Problem but when I get in a bad mood about this I do have to remind myself that it is a luxury to have this problem.

The trouble with (some) words

Newton haircut

While taking a little break from blogging (laying low) I did some of these things in a discombobulated way, not in order of occurrence: went to spinning straight from Boston in my street clothes, went to yoga in my tennis clothes, took a fabulous 20-mile bike ride on the Allegheny Rail Trail (part of long weekend in Pittsburgh and Hidden Valley, great friends, great food), naively/insensitively posted on Facebook and tweeted about a complaint I had with a company when I should have sent an email, got slammed, insults flying at me that you would never say to someone's face (fuckwaste of a human being, seriously?), did the wrong things (over engaged, overreacted) when, according to this timely post How to Deal With Twitter Drama, I maybe could have engaged for a little while but then should have walked away as the stress level climbed and I even cried; then, following advice of a son who said to think about why I'm tweeting (to promote myself as a writer and comment on the things that interest me, also, cute dog stuff allowed) — and who suggested going back and deleting all the threads of the conversation — went back and cleaned the slate, took a break, and restarted and rebalanced by sending positive vibes to the universe, complimenting other writers or liking and retweeting good advice and thoughts and Democratic points of view.

Since that might have been the longest sentence I ever wrote, time to start another. Gave the pep talk to another Dana-Farber patient who relapsed after bone marrow transplant (connection through the One-to-One program in which those of us who've been there help out those going through it), and she said she felt a lot better.  I said, as I said to previous patients, that I don't know if I should tell her every crazy thing that happened to me because I don't want her to get it in her mind that the same could happen to her, but that I would tell her if she wanted to know, to point out that I'm fine, going on eight years, and she said yes, please tell, because she needed to hear about a good outcome despite twists and turns. I told her what my nurse Vytas (who I miss so much), always said when he sat on my bed and called me Nervous Nellie: "They'll figure it out."

I sent some reading material, including Complex Case Study: Four Stem Cell Transplants for Acute Myeloid Leukemia (AML), in which my Dana-Farber caregivers explain the whole thing from its start in 2003. She asked if she could call and I said of course.

Interspersed with all of this, I managed to go to ECP, get a Newton haircut, go out to dinner with friends and see a great play at The New Century Theater in Northampton, play tennis at the Canoe Club before it rained, walk the dog, and watch Wimbledon, including the tremendous women's final.

Some other thoughts on parsing sentences and phrases: As previously noted, my skin condition backtracked after I extended the time between ECP sessions to three weeks instead of two. I quickly returned to two, but my skin has not bounced back to where it was. I showed Ellen, the PA, how the skin on my abdomen had hardened again (a result of the graft vs. host disease of the skin)  and she said she thought it might be something internal because my skin is OK.

"It's nothing to worry about...for now," she said.

"For now?" I asked. "What does that mean?"

She said it's just something they say.

I repeated this to the two nurses taking care of me and asked, "Does she think I have ovarian cancer?"
They both said to forget about it, it is common for your skin to take a while to soften up after backsliding. One of them said that the PA's modifier was like saying, "Your house is not going to burn down...for now," "That bus is not going to hit you for now," and, adding some more to make me laugh, concluded it was just a case of CYA (Cover Your Ass). Hello healthcare providers: This is not helpful.

Then there were the words the hairdresser told me upon parting, when upon the recommendation of a friend, I got a Newton haircut. I asked what he was going to do, and he said, "Give you the best haircut you ever had." It was a great haircut (twice the price of Western Mass, though), but he said a kind of odd thing, telling me that from looking at me he knew every bone in my body, which is why he can give a good haircut, and at the end of our visit saying, "I sense a lot of fear."

Say WHAT?

These things are the reason that when driving home Thursday and realizing I didn't have time to go home and change for spinning, I went straight to the Y in my street clothes. Luckily I had my biking shoes in the car.

It was so humid that the fitness class was canceled, but while sweating like crazy, I felt my brain calm down.

At night, another strange thing happened.

I heard a crash in the hall outside my room, but, half asleep,  I didn't get up to investigate. I thought maybe a robber was out there and wished Maddie was a barker. Then I decided it was just a house sound and drifted back to sleep.

In the morning, on the wall where an antique mirror in a wood frame used to be, there was only a piece of wood hanging from a wire. I looked all over and couldn't find the mirror. OK, I thought, so someone had come in and stolen the mirror. Then I saw it face down on the other side of the room. As I went to get it, I said, please don't let the mirror be broken, because then I would have worried that I was going to have seven years of bad luck.

Thankfully it was all in one piece so I had one less strange thing to worry about.

All of this really happened

When talking to Dana-Farber's assistant VP for Gift Planning Alice Zaff at the recent Chefs for Jimmy, I told her I would send her the link to what Dr. Alyea and Melissa wrote about me in the fall 2014 e-newsletter, Advances in Hematologic Malignancies.

I directed her to the second link down, Complex Case Study: Four Stem Cell Transplants for Acute Myeloid Leukemia (AML).

There, she would see my story, starting with my diagnosis in 2003 at age 48 after unusual fatigue during the Saint Patrick's Road Race.

I won't repeat the whole megillah; you can read it if you want by clicking on the second link. When I reread it, certain things jump out at me: the nearly four years in remission after my first transplant; the relapse in 2007 (not included in their telling was the fact that Korby and I had just won at the Districts); transplant #2 with an unrelated donor (allogenic transplant) ; and six months later, pancytopenia (empty bone marrow), followed by transplant #3.

Picking up from there, they wrote: "Six months after her second allogeneic transplant, the patient's peripheral blood counts again declined. A repeat bone marrow biopsy demonstrated second relapse of AML. She was readmitted to Brigham and Women's Hospital with fever and neutropenia in December 2008, and did not re-emerge for four months. She underwent another induction chemotherapy with a high-dose cytarabine-based regimen and had multiple life-threatening infections, including pulmonary aspergillosis and cytomegalovirus (CMV) colitis with a related gastrointestinal bleed. Other complications included delirium and severe edema."

They didn't even get around to talking about the kidney failure and the coma.

It was during that stay that I received my fourth transplant, on Jan. 31, 2009, with a different unrelated donor (Denise).

Today when I looked at a bottle containing 300 vitamins at Costco, I said to my friend, "I don't know if I'll live that long."  That kind of "joke" still comes out of me reflexively. After I hit the five-year mark, I was no more likely to die of leukemia than anyone in the general population, but once you are afraid for your life in the way that I was, it doesn't totally leave you.

God willing and the creeks don't rise, tomorrow I will go to Fairfield to celebrate my seventh birthday, or re-birthday, thanks to Denise and Dana-Farber.

Complex case study: four stem cell transplants

The latest issue of the e-newsletter produced by the Dana-Farber Brigham and Women's Cancer Center's Adult Stem Cell Transplantation program features a complex case study: my own.

I never sought this distinction, but since it was given to me, I am glad it can play a role in spreading the word to other hospitals and doctors about this amazing team that provided not only top-notch clinical expertise but also compassionate care.

By clicking on  Advances in Hematologic Malignancies, you can see the whole issue.

Then drop down to Complex Case Study: Four Stem Cell Transplants for Acute Myeloid Leukemia, followed by The Patient's Perspective.

As a bonus, people who hear me constantly sing the praises of Edwin Alyea, MD, and Melissa Cochran, MS, NP, of the Adult Stem Cell Transplantation Program can get to see their smiling faces at the end.