Thursday, February 25, 2010

Blood in, iron out

On Monday, I started taking a drug to lower the amount of ferritin in my blood. Ferritin is a protein that binds to iron; most iron stored in the body is bound to ferritin.

According to Webmd, small amounts of iron are normally stored in the liver and heart, but excess iron will eventually damage these organs.

The extra iron, or ferritin, needs to be removed from the body either through phlebotomy, taking blood from the body, or by taking a medicine called a chelating agent that binds to and removes iron from the body.

Meanwhile, low iron, associated with anemia, results in low ferritin levels. When I look at my counts, there are many that I don't look at because I don't really understand what they mean. Levels of iron and ferritin never came into my radar.

Exjade (or deferasirox), the pill I am taking, is a chelating agent for chronic iron overload due to blood transfusions. You take five pills a day dissolved in water or juice and then wait 30 minutes to eat. Getting this expensive drug was quite a production: Calls from Dana-Farber to the drug company and insurance company, and calls from the drug company to me. It arrived at my house in a black canvas shoulder bag with an outside pocket for the water bottle that came with it.

When I took the first dose I approached it like it was a lump of burning coal.

For people who get easily freaked out by a list of complications that always include death in a small number of patients, this one's a doozy. To paraphrase: Some patients developed severe kidney problems, sometimes fatal, with most of the fatalities occurring in patients who were very ill or who have kidney problems or who take medicine that affects kidney function. Some people developed severe liver complications, sometimes fatal...and some patients developed blood disorders, in some cases fatal.

Finally, serious allergic reactions (which include swelling of the throat) have been reported in patients taking Exjade during the first month of treatment. You can also develop a severe rash, hearing and vision disturbances. If reactions are severe, stop taking Exjade and contact your doctor immediately.

Swelling of the throat is my favorite. What if you are alone and your throat swells so much that you can't speak into the phone to call your doctor? What if it's the middle of the night?

Well, a problem almost occurred, but at the last minute I straightened it out.

The pills came in five bottles of 30 pills each, separately wrapped and then wrapped again in bubble wrap. I removed the first bottle and then put the package containing the others in a safe place. I remember feeling satisfied that I put it in the kitchen (as usual), but slightly off the beaten track so it wouldn't fall out on me from the usual jam-packed cabinet.

I didn't start when planned, because I got sick. But this Monday, my problem with my blood counts resolved, I took out the first bottle, which I still had in my sporty bag after bringing it to discuss with Melissa. I took the first five pills and figured I'd take out the rest to have them handy. I looked in all the regular spots and could not find them. I looked again. Nothing. First thought: I AM SCREWED. Quickly followed by: You have lost your mind. What kind of Space Cadet or irresponsible or crazy person calls Dana-Farber and confessesferr, "I lost those pills." I couldn't do it. I kept looking.

Finally I gave up looking and tried something that Meryl taught me: You put a glass upside down on a table or counter and a missing thing makes its location known. (Thanks, Meryl!) It's been frowned on by some in these parts, so I haven't tried it.

But the other day I put a glass upside down on the counter and waited. I stopped thinking so hard. Within a couple of minutes, my mind cleared and I walked straight to a cabinet whose end extends behind the side of another cabinet, making it not easily accessible. You can't put anything frequently used there, so sometimes I throw something back there if I don't need it for a while.

There was the bag of pills. I was saved! I took them out and looked at them as though my lumps of coal had turned into gold. I hadn't felt so good in ages.

Saturday, February 20, 2010

Back on track

I can stop running back and forth to Dana-Farber for a while. Joe, who is on February break, drove me in on Wednesday for a CAT scan of the sinuses. It came back clean, and my blood work went back to where it was before it started being funky.

White count, at last check, was high at 15, a sign that I was fighting infection. (Normal is 3.8-9.2). This week it was 8.8.

Red and platelets had been lower than usual, but on Wednesday they were OK. Hematocrit was 32.1 (normal is 34.8-43.6), and platelets were 75 (normal is 155-410).

I'll take it. Turns out the disturbance was caused by a virus. I don't have to go back until March.

On Thursday evening I took a yoga class with Erin at her Ahimsa Yoga Center in South Hadley. In addition to being a good teacher who explains everything clearly, she has also become my friend and knows where I'm coming from. So I feel very comfortable going in there. I still don't have my strength and balance back; Erin said the only way is to practice.

I'm probably getting something from it, but it's hard to tell, because during some of the poses my mantra is "get me out of here, get me out of here."

Today Donna and I shared an hour-long lesson with our coach George, who I haven't seen in a while. It was nice to see him. I haven't been on a court with Donna for ages, either. She has some powerful strokes.

The hitting felt great; I didn't miss very many. George said my shots and endurance were looking good, and, same as Erin, he said I just need to practice and strengthen. He said that when his father was in bed after an illness, he pushed a broomstick up and down over this head. OK... Well I have a bunch of light weights and a workout plan for using them. I just need to use them more regularly.

Both Donna and Joe reminded me where I was this time last year. I was in the hospital and just about to take a turn for the worse. Dr. Alyea gathered my family one night (Joe says is was Feb. 22) and told them I might not make it through the night. Donna and another friend from tennis, Deb, had come to visit and were asked to leave the room. Donna remembers her fear when she saw how sick I was.

Today my concerns were: follow-through, hit under the ball, keep your eye on the ball, knock the ball off the cone, hit high when doing friendly volleys. Then, take the dog for a walk before it got way too dark, and then, take Joe and Katie out for dinner, something I haven't done in a long time.

Now I think I'll go lie down.

Sunday, February 14, 2010

From Boston to New York, enough to keep me busy

There is something a little off.

For two weeks, my white blood count has been elevated (15) and my platelets (57) and red blood count (30) have dropped. In the morning, I felt like I was getting a fever, but I didn't until for just one day I was 100.9.

I went to Dana-Farber and had more blood tests (still awaiting results), and a chest x-ray and a CAT scan that came out normal. I went on an antibiotic. I saw Dr. Francisco Marty, the infectious disease specialist. Nothing came up. I am feeling better, but I need to call tomorrow to see if there are any results.

I also saw Melissa, who talked to Dr. Alyea about what might be going on. Later, I bumped into him in the corridor and he said, "I'm hopeful, no I'm confident, that this will turn out to be nothing." I wasted the next little while pondering whether he meant hopeful or confident, because, of course, it's better to be confident that hopeful. Then I toyed with the relapse scenario, and then I really tried to let it go.

I didn't have much time to worry about it, because after school on Friday, Katie and I took off for New York. We had a great time. We started by going to our old apartment building and having cocktails with Muriel (15th floor) and Martha (12th). Martha is past president of the U.S. Center of the International Theater Institute and sill travels around the world making connections among theater groups. She won a Tony Award years ago; for my mother, her name often came out as Martha-who-has-a-Tony. She's about 70, wears long glass earrings and necklaces, promotes the work and not herself, and is a fascinating source of information about current and past theater.

Muriel, who is somewhere around 93, has become our surrogate mother in the building. We usually stay there, but she had a full house. She's gracious, funny, warm, and also very smart with a lot of stories to tell. When we stay there on a theater weekend, she leaves us a box of dark chocolate Petit Ecoliers, or Little Schoolboys, a piece of chocolate on a biscuit. This was our after theater snack with my parents. We eat it looking at the night sky and a view of Central Park.

We stayed with my cousin Jeanne, her husband Bruce and their daughter, Amanda. We also saw Ben and Meg for lunch, (high school friend) Pam for a walk, (aunt) Marge and Bill for dinner, (cousins) Joanne and Serena for brunch, and cousin Peter and his wife Ann for lunch at their apartment in the Bronx on our way back. I don't think we could fit in anyone else.

Saturday morning I went with Jeanne to yoga. I knew all the poses and could have done them before my last hospital stay, but I haven't totally regained my strength or balance. I thought maybe I should leave, because I was wobbling all over the place, but I decided to stick it out. It's going to take a lot of practice to get back to where I was.

The big event of the weekend was seeing the Tony-winning rock musical, "Next to Normal," about a mentally ill woman and how her family (father, son and daughter) falls apart around her and then struggles for signs of hope so they can at least be "Next to Normal."

With music by Tom Kitt and book and lyrics by Brian Yorkey, it was directed by Michael Greif ("Hair") and stars Alice Ripley, who won a Tony for best actress. You could see every detail of their faces, but even if you couldn't, the show was so dramatic that you could get shivers all the way in the back. I wasn't sure I would like it, but it was amazing.

Made it back around 7 p.m. tonight, and although I'm tired, it was worth it. And I didn't think about leukemia at all.

Wednesday, February 10, 2010

Goodbye to a great guy

During my first round of chemotherapy for leukemia in 2003, I had a funny nurse named Vytas. In between treatments, while resting at home, I fainted, and my son Ben took my mother and me to the emergency room at Baystate Medical Center in Springfield. We waited there all day, the local nurse updating Vytas at the other end. Finally, an ambulance became available and took us to Brigham and Women's Hospital in Boston around 9 p.m.

Vytas was waiting at the other end. On the chalkboard he had drawn a picture of himself – a bald grinning elfin guy with a curl sprouting from his head – and the words "Welcome back, Ronni."

It was past the end of his shift, but he said he wanted to see me through. He made me feel better. And I needed all the help I could get. I had a fever and was covered from head to toe with a rash that made me want to either scream or cry.

Over many years and through four bone marrow transplants, he always took that extra step. His kindness and sense of humor helped me get through many tough spots. I'd panic over some new detour on the road to recovery, and he'd calm me down with a mix of knowledge, a talent for putting things in perspective, and, always, something funny.

Vytas Durickas died yesterday. His daughter found him in his Newton Corner home, where he had apparently suffered a heart attack. (This is a correction. I originally thought his niece found him, but his son corrected me in his comment.

He had been through lymphoma twice. He liked going to cancer conferences where the focus was on getting emotionally healthy. He told me (and I assume other patients): What will be, will be. Don't look back. Don't waste time worrying. Stay in the present. Make plans. Enjoy yourself.

He called me Nervous Nellie. He'd come into my room, plop into a chair, and say, "OK, what's wrong today?" Then he'd deconstruct it so I understood the options. When that wasn't possible, he simply said, "They'll figure it out." He said it with such confidence that I believed him.

He was the antidote for crazy thoughts. When I was newly home after my first transplant, my dog got skunked and then ran through the house. I called Vytas and asked if skunk fumes could make me sick. No, he said, they couldn't.

When I entered the hospital for my third transplant, he welcomed me to my new room by writing on the board, "The third time's the charm."

Last year, after my fourth transplant when I was really sick, he came in at night when his shift was over and squeezed my hand. Katie said that one evening when the kids were there, Vytas showed that he knew "Ronni-speak." He asked me if I wanted anything and I kind of grunted. "Oh," he said, "She's cold and she wants a blanket." So he put a blanket on me, and I pulled it up closer to my chin. "Is that what you wanted?" he asked. I made a little noise again and nodded my head.

At the end of that hospitalization, he vanished. From what I gathered, he had walked into the emergency room feeling ill, and ended up being admitted for heart surgery. He wanted to keep it quiet, and it took me a while to find out where he was. When I saw him again during his recuperation, he said everything was fine. He stayed out of work for a while and was happy to return. He didn't discuss his heart much, although I'm sure others knew more details. He worked last week.

Life is strange. All this focus on lymphoma, and he dies of a heart attack. The weak heart may have had some connection to the radiation he received for lymphoma, but I'm not sure of the details.

He seemed like the Energizer Bunny. It's hard to believe this great guy is gone.
When I went to the clinic on Monday, I had this strong feeling about calling him. I even picked up my cell phone to dial him, but I got distracted and never did it. I figured it could wait until next week.

Obviously, it couldn't.

Saturday, February 6, 2010

Sugar makes the world go round

I found out why I have a hard time getting up in the morning. I know part of it is that I stay up too late, but when I go to bed earlier I am often as slow as before. So this could be another reason:

I eat too much sugar before bed. Over the years I've tried skipping that gigantic bowl of ice cream after dinner. But I get the biggest craving for it. We always got the kids when they were little to change into their pajamas by offering them a snack after they changed. It was their "jammie snack."

Years later, I figure I crave it because I need it. I was talking to a doctor recently who said she thought evening eating was just a habit. She's switched to graham crackers and milk.

I go through sugary phases. Lately it's chocolate ice cream or its various forms, such as Ben and Jerry's chocolate brownie sundae.

Of course there is a line of thinking that you shouldn't have any sugar at all, especially when cancer is involved.

I read a little piece in the March issue of "Runner's World" saying the culprit is too many carbohyrdrates in your last meal at night.

"If you skipped dinner or ate fast-digesting foods like rice, bread or sugar desserts, your glycogen levels will be depleted, making it even harder to muster the energy to get up.

"Prep for an early-morning run the night before. Eat slow-digesting carbs like broccoli, beans and lentils," the unnamed columnist writes. Set your coffee-maker to brew before you wake (you need to get as much sleep as possible). Also turn off your computer and TV at least 30 minutes before bed.

I told Katie we were having broccoli and lentils for dessert. (The other possibility is to skip dessert. Ouch!) I went to the store seeking lentils.

I couldn't find them, so I bought a bag of Oreos.

Monday, February 1, 2010

And now I am one year old

Saturday was my re-birthday. It was a year from my transplant. I was one year old.

People have different names for the new birthday. Re-birthday sounds fine to me.

I've had enough re-birthdays already. Sept. 18 marked my autologous transplant (using my own stem cells.) I had three re-birthdays on that day. I didn't get past six months with my first two allogenic transplants (10/15/07) and 6/9/08).

This last time (1/30/09) I had a new donor and a new start. I was so worried about the 6-month "jinx," and now I have finally made it to a year. Next week I get all my vaccinations. Woo-hoo! I will send my personal information to my new donor soon. First we will write, and eventually meet. I sent a few anonymous letters to my first donor, thanking him for his generosity. I don't think there's a reason to go further.

I am happy to be here. I have let my guard down a little. I have made so much progress in a year. Time does really help. But the "re-birthday" is complicated after you've relapsed.

There was so much hope, and so many disappointments, and such sickness. I know a little too much about all the things that can go wrong. And as much as being a year out allows me to look ahead more easily, it also sends me looking back with regret.

You gave to find the line between knowing it's normal to have a range of negative feelings. but not dwelling on them. When my father was in his eighties and not feeling well, if you asked him how he felt, he said, "Can't complain."

Last week I needed some blood work at the office of my local doctor. I guess I was complaining. I said that in 2007 I was more than three years out and feeling great, and then, poof, back to square one.

Well, he said, you can't get to three years until you get past one.

Interesting thought. I guess I'm on my way.