Mistakes were made

I made a mistake by getting the photodymanic therapy Thursday so close to Passover and the seder I'm having today, but by the time I realized it and went to reschedule I discovered I would have to wait until fall. With precancerous spots in various areas of my face and neck and a recently removed squamous cell, I decided I better do it.

To do this procedure, the doctor applies a photosensitive chemical to your neck and face, and then you get wrapped in Saran wrap and a layer of foil and hang out for an hour. Then you get an intense blue light for 16 minutes. It feels like the worst sunburn you can imagine. The last few times I got one blower to hold in my hand. This time I got one for each hand. You wave them around while you are frying. The benefit is that you get a fresh layer of skin.

 It occurred to me that I could have brought headphones and listened to music but it was too late. So I just focused on my breathing. Some doctors came in to observe the procedure. Dr. Lin told them that I had a bone marrow transplant and that I play tennis. Tell them I had four, I said from under the machine. They were impressed. One asked who my favorite player was and I had to search my memory because I was distracted by the scorching light. I came up with Federer. The doctor said he likes Nadal, and I said I like him too, and then they disappeared and I was left on my own.

Afterwards, Dr. Lin asked me how it compared to the other times I had it. I said it was a little worse. She said that is because she added more of the chemical. Somewhere in the small print it says not to do it before a special occasion. My face is swollen, red, and painful as though I fell asleep in the sun. Yesterday I was achy as though I had the flu. A friend volunteered to finish my Passover shopping, but it isn't the kind of thing you can ask someone to do. I needed to pick my flowers and wine. So I went to Whole Foods, which was even more crowded than usual. I saw someone I knew and looked the other way.

It was pity party day, which comes with a layer of guilt because I know two people who are dying and one who just lost her husband. It is bad that I got what I got, but good that all these treatments exist. The stuff on my skin is partially my fault – due to the sun-worshipping, lifeguarding, and tennis – but it wouldn't be so bad if I wasn't on prednisone and hadn't had my immune system manipulated the way it has been.

To conclude on a better note, I had the best ride in on Wednesday for my ECP. My driver was a big black guy who had played football at Arizona State but had to take time off to come back to Springfield to take care of his parents. He is also a poet. When we started chatting I found out that I am not the only one who has had terrible rides. He said most of the passengers have experienced the same thing or worse.

He told me he had submitted a poem to the New York Times but got rejected. I suggested he go to the library or a bookstore and read poetry journals, then find a couple where he thinks his style would fit in, then read submission guidelines and send in some poems. From the back seat I looked up poetry journals and sent him a link to about 100 or so. We followed each other on Twitter, where I thanked him for the nice ride. He thanked me for the info. I said he could contact me if he needed any help writing his queries.

As previously said, I decided to pre-medicate before my ECP on Wednesday. When I got to my bed I saw that I had Frank, who is the most experienced at putting in the needle. I told him that if I had known it was him, I wouldn't have wasted the oxycodone. Also, he is so funny, making a pun a minute, that you are cracking up instead of crying. When I told him that I had taken the oxycodone, he asked if I was getting a buzz. I said yes. Then he went to YouTube on his phone and played Jefferson Airplane. It was a quiet day there, and a couple of the nurses started dancing. I'm afraid that due to the effects of the oxycodone I talked the ear off of the woman in the bed next to me. She also had a bone marrow transplant for AML. A couple of nurses sat and talked to me, and before I knew it, I was done. It's a good thing that I took it, though, because near the end my arm started to hurt.

Then I got a ride to Margaret and Nick's, where I had dinner and spent the night. The next day I got another ride to Brigham and Women's, where I got my face fried, and then another ride home. Almost immediately I turned around and went to get Maddie at Jim and Jane's. It was beef stew night, and they had a place set for me.

One day, four sticks (in the arm)

8:52 p.m. Just walked into house from Boston, wondering if I should have Ativan or wine. Go for the Ativan, find something to eat, and sit down to write before I forget what I want to say.

Dueling phone conversations on the way home, my driver nice enough but talking loudly on handheld phone, thank you Greg Pearson for the pleasant conversation almost half of the way home.

Someone called in sick so the supervisor had to drive me this morning. To his right was a computer tracking the 16 cars in this fleet, in his hand was the phone on which he was fielding calls. I said I hoped he would be able to keep his eye on the road and he said, don't worry, he would, but with so many distractions who knows what would have happened.

On the way there as I read the New York Times in the back seat, we had a brief conversation about how most of the news these days is bad. He said he doesn't even listen to the news anymore. We talked about all of the shootings, and somehow we got on the topic of gun control, and he said, "I have a gun and they want to take it away." I had a word or two with him about this.

I talked to Melissa about going to Dana-Farber to get fluids before my procedure to avert the problems relating to dehydration that I had last time. I am still having as-yet undiagnosed stomach problems and waiting for test results. I called ahead to the Kraft Blood Donor Center to say I would be in at 4 instead of 3 and would therefore only have time for five cycles. The nurse I spoke to agreed.

While I was getting the fluids (and a flu shot), Melissa walked over. It is always so nice to see her. She said the first part of my test, the one that was the most concerning, came back negative. She went back to work and I dozed off and woke up with a shock when she said something to me. It was that the people at ECP didn't want to see me at all because I wouldn't be there very long. Melissa and the nurse who was giving me fluids told me they thought that was ridiculous, I would still be there for two hours, and I hadn't come all this way just to turn around and go home. They made their point to the people at the other end, and Melissa walked me over.

Pat, my nurse for the day over there, got the big needle in my left arm, but it must have hit scar tissue because it didn't work. She switched to the right arm and I was relieved to see the blood coming out. They only did three cycles, but apparently even a little does some good.

In the morning, five of us went to tennis at the Canoe Club. It was warm for a while but then got cooler as the breeze picked up and made the ball do crazy things. We had our usual good time, but I got hit with a ball four times. George says it is your own fault for getting hit because you need to get out of the way. That was the case with three, but the fourth was a case of somebody just hitting the ball onto my court. But I made up for it by hitting the ball off two cones and catching a ball in the neck of my racquet, earning me the chance to make a wish.

Confessions of a crazy runner, cont.

On Friday, I received the results of the bone scan I had gotten the day before: I have a stress fracture on my foot.

So on Monday I got an air cast that I am supposed to keep on all the time except for when I'm driving or showering. It should take four to six weeks to heal. Katie says it looks like a duck.

I don't want to bore you with repeating the cause of the fracture, which I described in the post "Finishing with a Flourish." If you're just dropping in, I'll summarize: I ran six miles despite pain in my foot. Why? It never occurred to me to stop. Now I am paying for it.

I know others have done similarly stupid things. And yesterday, Gina Kolata's column in the New York Times, "One Runner's Suffering is Another's Inspiration," , reminded me that running through pain is a common thing to do.

Kolata says she runs for the euphoria and will keep going to achieve it. Other reasons: "In races, for example, many of us keep going because we want to see how well we can do. Some do it because they are stubborn."

I guess all of those apply to me.

She mentions Japanese writer Haruki Murakami, who wrote in his book "What I Talk About When I Talk About Running" that he wants his epitaph to read, "At least he never walked."

Well, I personally wouldn't go that far.

Kolata explores new scientific research addressing the question of pain in exercise, not coming up with definitive answers but raising interesting points.

So, no tennis, no dog-walking, no running, and not even any swimming. Just a lot of sitting around, eating, drinking coffee, getting out of shape and kvetching.

Triggers and more

Things are going well.

Yet it doesn't take much to push me off track into what my friend PJ calls The Dark Side. Yesterday's trigger was a New York Times story headlined "Transplant Patients Put at Risk By a State's Financial Distress," about a new law signed by Arizona Gov. Jan Brewer eliminating Medicaid coverage of certain kinds of transplants as a cost-cutting measure.

Not everyone in need of a life-saving organ or bone marrow transplant is entitled to government money to receive one, but this was a case of patients in line to receive transplants and then denied them. For example, one man was prepped for a liver transplant and then told that his family needed to bring $200,000 as a deposit; he was discharged, and the liver went to someone else.

Despite how you feel about where to draw the line on government spending for health care, this was a heartbreaking story. The part that got me personally came when different sides started bandying about leukemia statistics. The state Medicaid agency had presented an analysis of the transplants that were cut, saying that 13 of 14 patients who received bone marrow transplants over a two-year period died within six months.

"But outside specialists said the success rates were considerably higher, particularly for leukemia patients in their first remission," according to the story.

So?

Statistics, except of course the really good ones, make me jittery. I know each of us is an individual, not a statistic. It was reassuring to hear specialists saying success rates are higher, but the words "particularly for leukemia patients in their first remission" made me shudder. What about patients in their third remission? The story implies success rates are lower, and I have no doubt that they are, but I don't want to hear about it.

I also started worrying about my Medicare services being cut. What if....? Everyone knows that asking "what if" gets you nowhere. But still, when you get stuck in the Dark Side, it's hard to stop.

While perusing the calendars at the Odyssey Bookshop before I read the story, I came upon a wall calendar with a few calming sentences for each month by Buddhist monk Thich Nhat Hanh. They are a way to help you focus on your breath, such as "Breathing in, I calm my body. Breathing out, I smile." I read them on the wall calendar but didn't buy it. I have them in a book; although they are helpful, you don't even need to say them. You can just count your breaths, for example up to 10 and back.

After the Times story got me going, I couldn't remember any of the sayings. My heart racing, I thought of taking an Ativan. Instead, I sat down on the couch next to the dog and read a book.

Meanwhile, due to having two teeth pulled, I didn't do much during the week except walk Maddie. I decided to go to yoga today, but there was no class that fit my schedule (read: too early) where I usually go. So I went to another studio where I like the teacher and the space.

I came out crankier than when I went in.

A kid yoga class (read baby-sitting) was going on in a walled-off space inside the studio. You couldn't see the kids, but you could hear them. They squealed and laughed and tumbled around while their instructor had them take monkey pose and such. I got more and more annoyed. I told myself to chill out. Hey, it was the sound of children laughing, not anything terrible like bombs dropping. It didn't work.

I asked a man on our way out if the kids bothered him.

"No, I didn't hear them at all," he said.

"Bad yogini," I scolded myself.

Afterwards I took Maddie for a long walk through the woods and around a field. It was a dreary day, cold and gray. But I stopped several times on the path and looked up at the bare treetops, dark against the sky. It was quiet and soothing. I had a few words with Maddie, who insists on grabbing big sticks and staying close to me, whacking my legs along the way. I finally got her to go in front of me, and she looked so cute trotting with her over-sized stick that I had to laugh.

This post is getting too long, but I have one more thing to say.

Several of us have written lately that we are unhappy about our looks.

We are not having a contest for most messed-up face, but still, I am going to lay claim to that title. The swelling has gone down on the cheek where the teeth were pulled, but I have a big black-and-blue mark reaching under my chin and over my lip.

I am not going to post a photo.

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!

The healing powers of dogs

Yesterday, I came into the house and, as usual, my dog, Maddie, ran over to greet me, her tail wagging as she circled to be petted over and over again.

I got down on the floor and gave her a big hug. Getting down on the floor, and getting up, is not so easy, but that's what I wanted to do. I held her there, feeling the warmth of her body and the beat of her heart. It was better than taking an Ativan. She likes to cuddle on the couch and rest her head on your leg, but she's not big on getting a bear-hug (dog-hug?) on the floor. Still, she stood patiently for a bit but then dashed out of my embrace. She went into her perfect downward dog, then ran off and brought me a toy. We played tug-of-war and she ran around and around the dining room table. Made me laugh. So I got two doses of medicine.

With the healing powers of dogness on my mind, I sat down at my computer to check on the blogs that I follow and saw that New York Times editor Dana Jennings, who writes on the Well blog about his fight against an aggressive form of prostate cancer, had just posted about the ways in which the family dog has helped him. In a post titled "Finding My Inner Dog Through Cancer," he writes that their 12-year-old miniature poodle, Bijou, has been a canine Zen master, teaching him to understand his "inner dog," napping in the sun whenever possible and not keeping his feelings buried inside.

And, echoing the thoughts that I had just been having, he writes, "So often, we — dogs and humans — just need to be near each other. We need the presence of another heartbeat, the inhale and exhale of another soul. Dogs understand the healing power of having your skull kneaded, and constantly raise their heads toward our hands, the way plants turn toward the sun."

In an earlier post, he wrote about how Bijou helped teach him how to live in the present, appreciating the simple pleasures of daily life.

Maddie, my two-and-a-half-year-old chocolate labrador retriever, has turned into a real pleasure. During her long puppyhood, I complained about her behavior, but now she's doing for me all the things Jennings writes about.

I let her off the leash when walking around the lake, where she runs into the water, dashes into the woods and comes when called. Usually I put her back on the leash when we are about three-quarters of the way around. I don't know if this was coincidence or training, but yesterday she stopped and stood at the spot where I usually leash her.

When I took my mini-vacations, she was a welcome overnight guest in the home of our friends, Jim and Jane Bloom. She runs around in the backyard with their dog, Blue, and then settles into the household routine. They are really early risers, and sometimes Jim takes a nap in the afternoon after work. Maddie gets in bed with him and rests her head on his shoulder. She stayed overnight once with our friend, Karen, and slept in the bed with her son. It's great to have a dog that people like to have in their home.

Good dog!

Medical web searches lead to 'cyberchondria'

Cyberchondria -- leaping to dire conclusions while researching health questions on line -- is attracting increased attention.

Last Monday, Microsoft researchers published results of a study of health-related searches on its search engine and a survey of the company’s employees. The results confirmed that self-diagnosis on the Web leads searchers to conclude the worst.

“The researchers said they had undertaken the study as part of an effort to add features to Microsoft’s search service that could make it more of an adviser and less of a blind information retrieval tool,” The New York Times reported on Nov. 25.

The long-term goal is creating search engines that could detect medical queries and offer advice that did not automatically make searchers fear the worst, according to the story. In the age of too much information, that certainly sounds like a good idea. In the meantime, if you are going to search, a woman interviewed for a USA Today story had a good idea. In addition to checking out her symptoms (in this case anemia) she also searched for "anemia and benign conditions" so that she could have a balance of information.

If you do end up being diagnosed with a serious condition, the Internet can help you research treatment options and find the best doctor to treat you. After everything is in place, you might want to follow the advice of my doctor at the Dana-Farber Cancer Institute: STAY OFF THE INTERNET.

Through writing this blog, I already know more than I’d like to know. For example, when writing about my bouts with CMV, or cytomegalovirus, which affects people whose immune systems are weakened, I looked it up and found that in the worst-case scenarios, it can lead to disease and death. When caught early, however, it produces few if any symptoms, and they test for it early before it gets full blown.

Of course if you are prone to hypochondria, you don’t need the Internet to give yourself the worst diagnosis. Medical school students are known to have “medical schoolitis,” diagnosing themselves with every disease they learn about. Newspaper reporters like myself are also vulnerable. We write a lot of hard luck health stories, some with happy endings, others to benefit a cause. Then we worry that the disease of the day will pounce on us or on our loved ones.

I’ve always been a bit of a hypochondriac. A headache meant a brain tumor, and my sensitive stomach signaled stomach cancer. Then as a reporter I found new things to worry about. Once I wrote about an adorable toddler being treated for leukemia. Her mother said she became worried when her daughter developed small black and blue marks all over her body; these turned out to be a sign of low platelets caused by leukemia.

This was around the same time that Katie was learning to ride a bike. With each tumble, she developed another black and blue mark on her legs. I called the pediatrician. A nurse asked me if the marks were all over her body, and I said no, just on her legs. She said that if it was serious, the marks would be all over her body, but I could bring her in if I was worried. I let it go when I saw that each new mark corresponded to a new fall. By the way, the nurse told me that lots of parents called with the same question about bruises and leukemia.

When it came to my own diagnosis many years later with leukemia, I wasn’t a big Internet user, so I wouldn’t have looked up my symptoms. In any case, there wasn’t much to look up. I don’t think I would have found much if I did a search for “fatigue during a 10-K road race,” which was my only symptom.

I did know enough to feel that something wasn’t right, so I called my doctor the day after the race. He had a cancellation two days later, and when I saw him he did bloodwork “just to be sure.”

Not even two weeks after that, I was in the hospital. I had been diagnosed early enough so that I was otherwise in good health. Bottom line: If you really think something is wrong, call your doctor.

Illness can make you super-sensitive

I decided that it was bad for my health to be on the computer late at night. It creates a buzz that makes it hard to sleep. It's difficult to put the computer away, because my new MacBook has a habit of following me around.

The other night, having succeeded in closing the computer, I reached for leftover sections of The New York Times and turned to Science Times from Tuesday. I should have just stayed in the blogosphere.

First I read a story about the wonders of blood. The writer, Natalie Angier, seemed to make light of the possibility of dying from blood disorders. I know I was being super-sensitive, but I got upset, and dashed off this letter to the Times:

"As a newspaper reporter myself (at a regional daily in Western Massachusetts) I understand the urge to write playfully about a serious or mundane topic that might seem dry otherwise. In her Basics piece about blood, Natalie Angier begins and ends with an attempt at humor that is upsetting for a blood cancer survivor like myself. I assume that anyone who has been treated for leukemia or lymphoma , or who is a hemophiliac, would react the same way if they read Angier's lead paragraph in which she writes that if you lose too much blood, "you must either get a transfusion or prepare to met your mortician," and her concluding line that, "Should a clot happen to cut off blood flow to a vital organ like the heart or brain, the only one playing the harp will be you." In the body of her story, she does a fine job describing the wonders of blood, about which I had already, unfortunately, learned way more than I ever needed to know when cancer afflicted mine. Angier should not have been flip when talking about the possibility of death faced by many with blood disorders."

At the paper, we often get complaints from people offended by one thing or another: short people, tall people, fat people, skinny people...we roll our eyes, saying you never know who you're going to offend next. I wonder if the Times editors are now rolling their eyes at me.

Next I turned to a piece about the new book by John Grogan, author of the book "Marley and Me." I had read "Marley and Me" in the hospital and really related to his story about a poorly-behaved, and lovable, labrador retriever. I was about half-way through reading about the new book when I came to the point where Grogan said he had been thinking about his father's death...from...leukemia. I didn't finish the story.

So much for a relaxing read before bed.

I get upset when I read about people dying from leukemia. Obviously I know it happens, but when it becomes personalized, it's extra-upsetting. It brings on the post-traumatic stress, big-time. I'm sure it happens to other people who've been through any number of things. Bang -- you read about it happening to someone else, and you feel more vulnerable.

My social worker, Mary Lou Hackett, had told me I'm not alone. When Susan Butcher, four time- Iditarod champion, died of leukemia in 2006 at age 51 (she relapsed post-transplant), I was hit especially hard. She said the news was on all the televisions in the Brigham and Women's Hospital floor where patients were being treated for leukemia, and the nurses told the patients to turn the TVs off.

Even writing that sets me off.

So what are you supposed to do? Try not to get "hijacked." Allow yourself to feel sad about what happened to someone else, and then try to remember that it did not (and hopefully will not) happen to you.

And then, go do something else.

The long wait was worth it

I always expect to wait in the clinic for a while before my checkup, but today the waiting time was close to a record: two hours. I came, as usual, prepared with today's New York Times, leftover sections from yesterday, the book I am currently reading ("The Story of Edgar Sawtelle") and my little blue notebook, in case I need to jot down a question or a random thought.

I went through the newspaper and was reading the book when I finally got into a room. Sometimes I get caught up in thinking that delay signals bad news for me, and then my heart rate picks up and panic sets in. Today, though, I did a pretty good job of keeping the lid on. Maybe it was because I was so tired. I almost fell asleep in the chair. I did, however, have to resist my impulse to run into the hall, grab anyone with a white coat, and say to them, "Please, just turn on the computer and tell me my counts!"

Today I was scheduled with nurse practitioner Melissa Cochran. Finally, she came in. I knew the delay wasn't her fault; sometimes the whole system just seems to get incredibly backed up. Melissa apologized for the wait and asked me how I was feeling. I said generally pretty good, although I've been having some stomach problems.

She turned on the computer.
Drum roll ...

My white blood count was up to 3.8, in the normal range of 3.8-9.2. I can't remember when my WBC was last in the threes.
Hematocrit was up to 31.1 (normal is 34.8-43.6). Hurray for Aranesp!

Platelets were down a little, from 141 ten days ago to 133 today. (Normal is 155-410.) But 133 sounds good compared to my low of 4 during my last hospital stay.

If the counts are low, I usually toss the printout.
Today, I kept it. After quite a bit of worrying during the past week, I was, naturally, very happy.

Plus, Melissa said I could get a coffee for the drive home. By now it was rush hour in Boston, and I knew that door-to-door the drive would be at least two hours, so I was happy I could get coffee.

For the first time, I walked into a Starbucks and got a coffee.
Now, that felt normal.