Wednesday, January 27, 2010

Boring is good

I knew I was OK at my clinic visit Monday when Dr. Alyea walked in and asked who I thought was going to win.

I had to think for a second, but I knew he meant the Australian Open. A little sheepishly, I said I wasn't watching. Although it is counted as a Grand Slam tennis tournament, I, like many tennis fans, don't pay as much attention to it as to Wimbledon and the French and U.S. Open. Ben says it's probably because around here fewer people are playing tennis, even though the nuts, like me, play year-round.

Alyea was very pleased with my counts. "It's getting boring!" he said. I'm tired of being so interesting. So, boring is good. I haven't had a transfusion in about a month, and I am now finally making red blood cells and platelets.
My white blood count was 12. Red was 32, and platelets 74.
My blood pressure, even though I take Atenelol to keep it in control, was pretty high. So he added another medicine and said I should get my blood pressure rechecked today and also get blood work to see if the new medicine was messing with my potassium. My blood pressure was normal; the blood test results didn't come back yet.
That night I dreamt I was in a room with a couple of people taking an exercise class. I started jogging around the table. Then I picked up my pace and went around and around easily. "I've got it!" I shouted.
And the day after that I was inspired to try. I put on my running clothes and did a walk/run to the Lower Lake, i.e. the small pond. It's about three-quarters of a mile around. My goal was to pick my feet up, give no thought to speed and see if I could make it around without stopping. It was basically a walk with runner's motions, going just a little faster than I walk. But I did it and it felt like a run. And now that I got past that, I feel a little more enthusiastic about getting out in the first place during the cold weather.
Today I made a big investment. My shoes were in bad shape and, I'm sure, not helping me at all. So I went to one of the local runners' shops and talked to one of the runners who works there. It's so much nicer to go to these stores staffed by real runners, where you feel part of a community just going there, as opposed to shopping at one of the chains.
I'be been getting a Saucony Stabilityand before that Asics. We had a long talk about my level of pronation, and he recommended I get Motion Control. I'm pretty invested in getting the right shoes. because years ago I did battle with plantar fasciitis, which causes severe heel pain and is very difficult to get over. I had cortisone shots in my heel, slept with a boot on and did physical therapy, all for only brief relief. Then I found an excellent physical therapist who made me a pair of soft orthotics. I still get twinges, but he basically fixed me up.
Today I bought a pair of blue and white Brooks. While I was taking care of my feet, I decided to get a pedicure down the street. I don't do that very often, but it was relaxing, and now I have some nice-looking magenta toe-nails.
There's been so much to keep track of, I haven't paid much attention to my feet. Years ago when reading John McPhee's book "A Sense of Where You Are," which is about Bradley's basketball career at Princeton, I was interested in the amount of time that Bradley spent talking about the importance of taking care of your feet. He said that many other players ignored their feet and suffered for it.
So now I've taken care of myself. It felt good to make another little investment in the future.

Friday, January 22, 2010

I think she ate a squirrel

The other day I was walked around the Upper Lake at Mount Holyoke, not the best idea, because the path is icy, mushy and rutty. But I like it there, and so does the dog, so most of the time I go there, except on days when it's just too hard to get around.

The Upper Lake, about one mile around, is more woodsy. The Lower Lake, about three-quarters of a mile, is paved, and therefore it's easier to walk there. But I wouldn't let Maddie off the leash there.

You could actually call them ponds, but that's besides the point.

I usually let Maddie off the leash at the bigger lake. She dashes through the woods and comes back to me –most of the time. The other day we had just started her walk when she disappeared. I called, but no dog. I walked back and saw she was very close, eating a squirrel. I approached her and thought I saw a flash of something raw. Then she started crunching on the tail.

On one level, it didn't really matter. She's an animal, and she was just doing something that came naturally to her. But still, I wasn't happy. I thought about what she might throw up. I also wanted to continue the walk, not stand in the cold while she enjoyed herself. I went near her, and I thought I heard a little growl.

So I turned around to go back down to the path, falling and sliding down an icy bank. My arm and leg hurt, but not for long. I tried to make the best of it. I turned around and looked at the glistening lake for a Zen moment. But it's hard to have a Zen moment when your dog is devouring a squirrel behind you. Finally she came, and I leashed her up. I'm never sure if I should say "Good dog" when a dog comes after being disobedient. Bad to disobey you, but good to come.

What would Caesar (the dog whisperer) say? I think most dog trainers would say the same thing: If your dog is not totally under your control, don't let him or her off the leash. And also, your dog should not growl at you. This means he or she thinks they are the alpha dog, while you are supposed to be in control. Maddie is a really sweet dog who actually knows her place. I'm not sure what kind of work I'm supposed to add to get that extra bit of control. I guess I'll look for a local dog whisperer.

Today I kept her on the leash and walked twice around the small lake. It's not as good for her, because she loves (and needs?) to run. SOMEBODY had to run, so it had to be me. I've been feeling a little peppier once again (although I'd love to lower my dose of prednisone), so I jogged short distances between walking, tree-to-tree or anything I picked out.

I probably looked strange wearing my winter coat, but whatever. I can't say it felt good. My legs still feel weak, but you have to start somewhere, and I was pleased that I accomplished what I did. When I got home, I did some exercises and some yoga. Then I fell asleep on my yoga mat.

Tuesday, January 19, 2010

Recuperation or recovery?

Dana Jennings, a New York Times reporter who has been writing about his treatment for an aggressive form of prostate cancer, has, at two years out, been writing about survival.

A week ago, he wrote about the small ways in which he has been feeling like himself. He wrote that his post-treatment depression is lifting, he goes for days without thinking of cancer, and his mood is generally brighter.

Today, in a piece headlined "Healing Physically, Yet Still Not Whole," he looked at survivorship from a more somber perspective, as though he had hit a pothole when taking one of his five-mile runs. Talking about the difference between recuperation and recovery, he wrote, that recuperation is just physical, and that in our fast-moving culture, a sign of recuperation is jumping back on the treadmill, never admitting weakness.

But for Jennings, true recovery is taking longer, involving excusing himself from the daily grind, taking a deep breath, retreating into "a chrysalis of healing." He wrote that he couldn't bear the thought of answering the phone. "I didn't want to hear my own voice. I wanted to sleep, wanted to be in the wind," he wrote.

Been there. But with a little distance (and better weather), I feel like Jennings does in his earlier piece: brighter, more hopeful, less focused on the whole ordeal.

I guess everyone defines "recovery" differently. The definition may even vary from day to day. For most everyone, it involves time. If you're hit once, it's devastating. There are more layers for people with "special circumstances." What about someone who develops multiple cancers? Or people who relapse? Or someone whose cancer is followed by multiple blows, such as the death or illness of a family member or friend?

I put myself in that "special circumstances" category, because when I was three-and-a-half years out from my first bone marrow transplant, I really thought I was going to be OK. I almost shrugged it off when people asked after my health, as though I couldn't imagine why they'd even ask. Then came two relapses and three more bone marrow transplants.

It might be harder to recover if you've been hit more than once, but you still have to try. If you don't, you'll probably stay under a dark cloud, and nobody will want to play with you.

Saturday, January 16, 2010

"Bonanza' helps make the time go by

This morning I found myself humming the theme from "Bonanza."

For a minute I couldn't remember why. Then it hit me:

On Friday I had to take my Subaru in for a recall having to do with the catalytic converter. The building was new, and the waiting room spacious and clean. I settled in happily, opening my bag, which was filled with the enough newspapers to get me through a day at Dana-Farber. The large-screen TV caught my eye. It was tuned to TV Land, which was running an old Western. There was a pretty woman in danger. There were also a bunch of handsome cowboys, some good, some bad. There was a fight in a bar. It was all so silly, yet so easy to watch. It looked familiar, but I couldn't put my finger on the name.

Oh, most culturally illiterate baby boomer am I!

"It's 'Bonanza,'" said the man sitting next to me. "It was a popular show from the '60s," he said. (To be exact, Sept. 12, 1959-Jan 16, 1973.) "It stars Michael Landon, who was later on 'Little House on the Prairie.' He's dead now."

Maybe he thought I was an alien. Truth is, I didn't watch much "Bonanza." I was bigger on "Father Knows Best," "The Donna Reed Show," "The Dick van Dyke Show," "Supermarket Sweep," "Let's Make a Deal" and "Gilligan's Island." I faithfully watched "I Love Lucy," but it made me squirm kind of like "Curb Your Enthusiasm" does today. You just know that Lucy or Larry is about to do something terribly embarrassing, and you sit there shouting at the TV, "No, Lucy, don't do it!" and no to Larry too.

Anyway, I put my newspapers away and became glued to "Bonanza," thinking I should have watched it more. Two women came into the waiting room, glanced up at the TV, and, looking at the handsome young Landon, sighed, "Oh, Little Joe." By that time it was coming back to me. I was kind of sorry when my car was done.

Earlier in the day, I had gone down the street to do some strength-training with my friend Jo, who is a personal trainer. I used to run with her, and once took one of her exercise classes, and I was afraid that I would be so weak that I would embarrass myself. Actually I did better than I thought. When I fell into her while trying to balance, I launched into one of my, "I used to be able to do this" complaints, and she reminded me that I had already come a very long way, even from the time just months ago when I said I had tried walking with our friend Susan and my feet felt so heavy I could barely lift them up.

Tomorrow I have a so-called haircut and then coffee with my friend Diane. Later, I'll drive Katie to one friend's house where they will get ready for cotillion, the winter version of prom, and then to another friend's house for pictures.

From then I'm on my own.

Maybe I'll find an episode of "Bonanza" on TV Land.

Did I just confess to my Saturday night activity?'

Well, it's better than being in the hospital, which I was this time last year.

Wednesday, January 13, 2010

Big problems, 'little' problems

Me (left) and Diane after her birthday party at her house.

The news was even more dreary than usual today, topped by developments in the devastating earthquake in already-struggling Haiti. I was going to write a post topped by a little story from Monday's Boston visit. It felt so insignificant that I put it off and thought about it some more.

There is so much trouble in the world that I think sometimes we rank our problems against it and come out realizing we don't have it so badly. Yet that doesn't mean our problems are not real.

Sometimes people start telling me about a problem, often medical, and then they cut themselves short and say, "Well, I shouldn't be complaining to you." I always say that I don't lay claim to all the suffering, that everyone has a right to voice his or her own problem, and they should please tell me what's going on. Maybe I can offer some help.

I guess if you have a life-threatening disease, even though that doesn't shake the world, it's intense enough to talk about.

There. Now I feel better. So here's my little story:

My clinic visit was good Monday, so I got another pass and need only return in two weeks. Everything was about the same, with my platelets actually going up a little, to 68.

On the way home I wanted to see if I could find some "real" bagels and a Starbucks. So I called Diane. We both dismissed the chain, Finaigle a Bagel. Who gives a name like that to a store that has real Jewish bagels? "You want something that doesn't taste like it's been puffed up with air, right?" Diane asked. She said there was a store called Rosenfelds kind of tucked under some buildings in Newton Centre.

"Is this going to be another story called 'Ronni gets lost?'" I asked. "It doesn't have to be," Diane said. I don't know why but I have trouble in Newton. Last time I called her about going to that Starbucks I had ended up approaching it the wrong way, and we had no idea how I got so turned around.

My instructions were to park the car in Newton at Beacon and Centre and then get out, go into Starbucks, and ask someone to point me to the bagel shop. "You know what I'm saying," Diane said. Then she repeated it: park, Starbucks, bagel shop. I laughed at being told multiple times, like I wouldn't "get" it if I only heard it once. Sad thing is, that's true.

OK. Park, go into Starbucks, ask, see the bagel place diagonally across the street. Head out. In my black boots, carefully cross icy snowbank. Notice streak of white across the afternoon sky and notice that others carefully walking are doing the same balancing act that I am. Arms out, windmill style.

Arrive at Rosenfeld's. It's closed! A young woman peers inside the door. Closed Monday and Tuesday, she says, her face falling. I mumble shared disappointment. Back to Starbucks for coffee to go. (The coffee is excellent, by the way.) Share disappointment with "barista." He agrees it's not a good schedule.

Continue down Centre Street and get on the Mass Pike West with no trouble.


It felt really normal. One minute I'm at the Dana-Farber Cancer Institute, a patient, and the next I'm a pedestrian clambering over a snowbank and talking about bagels. (I bought bagels in Western Massachusetts, so it all worked out).

I saw a lot of the Pike Sunday and Monday. Diane had a birthday party Sunday afternoon in Newton, and I went to that. I know a lot of the people who were there and had a good time catching up with them. The food was good, and the company was good. More problematic was that I decided to drive back home at 7:30 p.m. (one-and-a-half hours) and then come back for my clinic appointment the next morning. People told me it was a bad plan. It probably was, but it seemed easiest. When I got back home around 9, envisioning a pleasant couple of hours, I was confronted by the same messy dining room table I had left behind, filled with financial aid documents that I needed to fill out, plus other problems.

Unrested, the next morning I headed back to the clinic. Oh well, at least I got a good report, had lunch with Margaret (combining something fun with a clinic visit is always a good idea), did NOT get lost and got a good cup of coffee, although, alas, no bagels.

Saturday, January 9, 2010

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!

Friday, January 1, 2010

Here's to a better year

My wall calendar, "The Secret Garden," consists of beautiful gardens around the country. Sometimes I just stand in front of the calendar, imagining myself in one of those gardens.

Today I ceremoniously dumped the calendar. Good-bye 2009. Good riddance. It was a very bad year. Well, it started in December 2008, when I relapsed. But the part where I almost died was in 2009, so that's the year that really gets me. Here's to a better 2010.

Good things, of course, did happen. I send my love and appreciation to everyone who made those things possible. And by the end of the year I'd made big steps, so in ways 2009 was a good year. Also I am thankful for my donor, who came to me in 2009 offering hope for a new chance.

I thought about the year while spending most of New Year's Day just hanging around the house, cleaning up, reading, doing things that needed to get done, and, yes, ceremoniously hanging up the new calendar.

I walked the dog, and then Deb came over with Mary Margaret, who at nine months old is nearly Maddie's size. (Maddie is almost three.) They wrestled and tugged on Maddie's toys and pulled each other's leashes. It's fun watching them. They make us laugh.

The flipping of the calendar reminds us how things change quickly. The kids grow up. So do the puppies. One minute you're healthy, the next you're sick. There's nothing you can do about it. Just keep flipping the pages.

Deb tries to keep Mary Margaret, left, and Maddie
in line for a photo-op.

Maddie (chocolate lab) and Mary (black lab) are almost the same size, above.
Below, just months ago Mary was just a tiny puppy.