Friday, October 31, 2008

Sugar and cancer: Is there really a connection?

It's well after dark on Halloween, and, as usual, we haven't gotten many trick-or-treaters, because we live on a busy road. As usual, I bought a couple of bags of candy (Snickers and Tootsie Rolls), and, as usual, I began eating them a few days ago.

I have a really big sweet tooth. I go through phases. A couple of months ago it was Peanut M&Ms (thanks Ellen and Mike). A while ago it was dark chocolate, which I know is actually good for you, but I lost my taste for it. Lately I've been into double-stuffed Oreos (thanks a lot Deb) and Nestles Crunch bars. (Are we still boycotting Nestles? Ooops. I just looked it up and found out that the boycott, due to Nestle's marketing campaign of baby formula around the world to the detriment of breast-feeding, was dropped but is now reinstated.)

Every now and then some new study or publication comes out to remind me that refined sugar is bad for me, and that I really should quit. For me it's not about weight, because I've always been thin, except for when I gained my Freshman Fifteen thanks to the boxes of soft chewy Freihoffer chocolate chip cookies that seemed to be a staple in every dorm room at Vassar.

Once I read that the only way to quit sugar is cold turkey, and that when you do it, and are freed from the sugar lows that follow the highs, you feel great.

But it is a hard habit to break, and right now I don't feel up to it. Sugar is one of my main comfort foods; I don't usually pull out the "after all I've been through" excuse, but it's an excuse I make for myself, as in, "After all I've been through, I deserve to eat sweets if I want to."

Plus, I balance the unhealthful part of my diet with many "good" foods.

I was reminded of the topic by the recent publication of David Servan-Schreiber's book "Anticancer". The author, a doctor and survivor of a brain tumor, ties refined sugar to increased cancer risk. Mike Hamel summarizes the book well on his blog, Cells Behaving Badly.

A google search for "sugar and cancer" turns up pages and pages of entries suggesting a link between the two. An article on the The American Cancer Society website points out that it is not, however, a matter of direct cause and effect: "Sugar increases calorie intake without providing any of the nutrients that reduce cancer risk. By promoting obesity and elevating insulin levels, high sugar intake may indirectly increase cancer risk. White (refined) sugar is no different from brown (unrefined) sugar or honey with regard to their effects on body weight or insulin. Limiting foods such as cakes, candy, cookies, sweetened cereals, and high-sugar beverages such as soda can help reduce sugar intake."

I will continue to live by one of my late father's favorite mottos: "Everything in moderation."

That is, until I finish working my way through the rest of the Halloween candy.

In the meantime, I wonder what comfort foods other people like.

Wednesday, October 29, 2008

Time to stop and smell the (last) flowers

My zinnias and hydrangeas lasted until last week, and I have been enjoying the last vase of them on my kitchen table. They are still hanging kidding!

My hydrangea plant (Endless Summer variety) bloomed like never before, providing enjoyment through some of my more anxious moments this summer and fall. As readers of previous posts may remember, I spent quite a bit of time collecting and drying hydrangeas. My efforts were successful, and I now have two beautiful arrangements in the house.

A lot of people commented on my hydrangea post, including my friend Margaret, who wrote, aptly, “The only solution to most anything is to live life one hydrangea at a time.”

My mind jumped into the future in a way that hindered my enjoyment of the last hydrangea. While I love having flowers on the table, I have also been trying extra-hard to
minimize my carbon footprint (and watch my budget while out of
work). So, I thought, if I buy fresh flowers, I am indirectly contributing to the use of fuel to have the flowers trucked to my market, and to the waste of the plastic or paper in which the flowers will be wrapped.

But I am also contributing in a positive way to my own mental health.

I thought of alternatives: I could use the bowl of fake flowers that my sister, Diane, brought to the hospital, where fresh flowers were not allowed. The flowers look so real that nurses and doctors often told me, “You can’t have flowers in here!” Then I would hold the bowl upside down to show them that the yellow and white flowers, though beautiful, were not real.

Then, woah, I said to myself. What happened to being in the minute?

And then I told myself that I do plenty of things to save energy, like keeping the lights off even when it’s cloudy and keeping the thermostat very low. So if I want to buy flowers for the table, I should!

In the meantime, I pulled myself back to the present. I drank my coffee and admired the flowers on the table. Then I went outside and said to the hydrangea bush, “Thank you, plant.”

I also tried to shift out of the melancholy that came with realizing that this sign of summer was finally gone...for now.

With a child’s wisdom, Katie had years ago already reminded me to stay in the present. I can’t remember what we were talking about, but I think it was around the time of my father’s death nearly seven years ago.

“Don’t cry because it’s over. Smile because it happened,” she said.

A couple of weeks ago I was cleaning out a cabinet filled with junk, when I came upon a piece of paper on which Katie had written that quote years ago. For some reason, it was on the back of a cardboard cutout of a smiling purple squirrel. Needless to say, I’m keeping it.

So…when we look back at the so-called normal part of our life that existed before s--- happened, I guess we need to say, “Don’t cry because it’s over. Smile because it happened.”

And, when have a nice bunch of flowers on the table, we have to stop and smell them without worrying what we’ll do when they’re gone.

Monday, October 27, 2008

Herbert Hoover and me

At my clinic visit today, I learned that my marrow is now 97 percent donor. This is, of course, wonderful news. I was slightly deflated to learn, however, that the percentage of T cells is rather low. (I didn’t ask for the figure.) Dr. Alyea said that he would be concerned if both numbers were low, but with one high (and with so many donor cells floating around) chances are good that the T cell number will rise. To help the donor along, I am lowering one of my immune suppressants, the prograf, or Tacrolimus, to .5 mg twice a day.

My hematocrit was up, to 28.9, due to last week’s transfusion. Platelets had inched up, to 49, and the white was down to 1.3, from 5.7 at my last visit after getting a week’s worth of boosting from Neupogen shots. Although I would have liked the number to be higher, Alyea said he was happy because my neutrophil count is high. (The way I explain this to myself is that I have a lot of healthy baby white cells on their way up.)

This was a fine report, but it was not, “Hurray, your counts are GREAT!”

I got anxious on my drive home, thinking, “Now I have to worry about T cells?” and “Why aren’t those platelets higher” and “What if the white count is still low next week?”

It was late by then, because my appointment had been at 3:30 instead of the usual late-morning or early-afternoon slot. In case you’re wondering where Herbert Hoover comes in, here it is: The 31st president became my distraction-of-the-day, thanks to a report about him on “All Things Considered,"discussing the debate between Hoover and his opponent, Franklin Delano Roosevelt, about ending the Great Depression, and tying it into our current presidential race.

I began piecing together my own tangential relationship with Hoover, and by the time I was finished, I was almost home and was not thinking about blood counts.

My sister, Diane, and I grew up in a small two-bedroom apartment at 1200 Fifth Ave., where we shared a bedroom. We looked out on a side street (101st) but if you craned your neck, you could see Central Park across the street. When we were really little, cousins of Herbert Hoover lived across the hall. They had a beautiful, much larger apartment with a sweeping view of the park.

I will have to do more research to fill in the blanks and make this a more journalistically respectable post. Googling has not been much help, so I’m going to call some of our elderly friends in the building to see if they can answer a few questions, now that I decided to write about it. (I want my mother! She would tell me.)

Anyway, there was Mrs. Hoover, her sister, Auntie Flo, and George, a younger man whom I believe was Mrs. Hoover’s son. To us, Mrs. Hoover never had a first name. This was the early 1960s, when we were very young, and Mrs. Hoover and Auntie Flo seemed (and I think were) VERY old. We hung back when our mother led us across the hall to say hello. It was dark and scary over there. You’d come into the large entryway and turn left into a big room with dark floor-length drapes, where Mrs. Hoover, always wearing a long dressing gown, sat ready to receive us. It felt like a haunted Halloween house. And as a sign that they didn’t clean very much, when they moved out, all the hungry roaches came skittering across the hall to us.

Our mother gave us a gentle nudge and we went, one at a time, to get a wet whiskery kiss from Mrs. Hoover, who always held a big glass of scotch in long, thin, bejeweled fingers.
Back in our apartment, we often heard the son (I THINK his name was George) shouting conversationally to Auntie Flo, who was quite deaf. Occasionally they came over for drinks. Mrs. Hoover would make herself comfortable and then she would hold up her glass full of scotch, raise it to her eye level, and say, “Dearies, the only way to see life at my age is through a glass like this.”

Suitably pickled, she lived a long life. I think Auntie Flo did the same. I’m not sure what happened to George.

Ahhh, those were the days, before I ever gave a thought to a thing called blood counts.

There isn’t much of a moral or message here, except to say that distraction sure works well if we follow the cues. Thank you NPR.

Saturday, October 25, 2008

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.

Thursday, October 23, 2008

Is blogging good for your health?

I looked into this question in a guest post that I wrote for the Leukemia and Lymphoma Society's blog.

I wrote about how I started my blog (with an April Fool's joke), how PJ helped me start navigating the system, and how I discovered the positives: connecting with kindred spirits, finding support and providing it, easing isolation, telling funny or (I hope) meaningful stories, and framing my thoughts in a way that often helped me find the silver lining.

I also wrote about the negatives: the sadness in forming connections with people who don't make it or coming upon blogs carried on by relatives of those who died, reading of other patients' medical problems and then worrying that I might develop those problems too, feeling neglected when I don't get enough comments, and spending too much time on the computer.

Another "con" that I didn't write about is the tendency to assume all of my friends and family want to read it and comment. Some do, which is fun, but others don't. We're an older group that didn't grow up with all this computer stuff; not too long ago, I didn't even know what a blog was, and some of my friends don't want to ever know, let alone participate in one. I tend to get a little obnoxious when I really want someone to read it, or when I'm just too tired (or sick of hearing myself talk) to explain the results of my latest clinic visit. Sometimes I say, "The details are on the blog," but really they want to hear it from me.

Sometimes I blather on.

Tuesday, October 21, 2008

Crazy busy Monday

I awoke yesterday at 4:30 a.m. to the sound of little feet pitter pattering on the floor. Then came the whimpering and whining. “Go lie down!” I whined.

It was the morning of my anxiously-awaited clinic visit, when I would see if my low counts had rebounded and if the results of the bone marrow biopsy were back, including the chimerism, which would show the percentage of donor cells.

I had to drag myself out of bed and take the dog out in the darkness. She quickly did “both.”

Oh well, I thought. It’s better than finding a mess to clean up. (She sleeps in my room after her bout of “inappropriate urination” when she used to sleep in the kitchen.)

Back in bed, I set the alarm for 8; I needed to be at Dana-Farber for blood work no later than 1 p.m. before my 1:30 p.m. appointment with Melissa.

The phone rang at 8:15 a.m. It was Meryl wishing me good luck. A soothing voice was coming from the radio, which I set to NPR because I don’t want to be jarred awake. The soothing voice sometimes just lulls me back to sleep, but I still haven't managed to change my ways.

My mind was almost “hijacked” while I brushed my teeth. I pictured Melissa telling me bad news of varying sorts…such as, “The donor percentage has fallen,” or “Your counts are so low that Dr. Alyea wants you to be admitted to the hospital,” etc.

I tried the first line of defense: “This is just your mind jumping ahead. You have no reason to expect bad news.” This approach felt a little flimsy, so I went for a two-pronged approach. I pictured my platelets lining up to be counted like good soldiers…lots of good soldiers standing tall and proud. Those were the ones that were the farthest from normal last week, so I figured they needed the most help.

Then light-hearted me played a game with anxious-me. I pictured Melissa coming in and saying, “Dr. Alyea wants you to buy a new car,” or “Dr. Alyea says the moon is made of cheese.” Please don’t write me off as really crazy. It was just a little mind-game that reminded me I REALLY had no idea what Melissa would say and that I might as well stick to the here and now.

Read The New York Times (politics first), ate breakfast, reminded myself that time was a-passing and I was lollygagging, walked the dog, got dressed and picked jewelry to match. Put rings on, then took rings off, because last week I wore rings and my counts were down, so this week if I didn’t wear rings…OK…that’s bad, but I gave into it anyway. Gathered supplies (books, newspapers, lunch), grabbed coffee cup, headed towards door, then put it all down to quickly give myself one more shot of Neupogen to give my white blood cells a boost.

By now it was 11 and I was cutting it close. Dana-Farber and I are a good match in many ways. I’m always late and so are the nurses and doctors at the clinic. Actually there was hardly any traffic, and I got to the clinic about 12:45.

It’s always hard waiting for bone marrow biopsy results. It’s especially hard if your counts are not quite where they should be. On the drive into Boston, I tried to breathe into a bubble of calm around me. I did the same when I arrived at the clinic. And in the waiting room, so as not to suffer from wandering-mind-syndrome, I dove right into the parts of the Times that I hadn’t read. These things actually worked pretty well.

After all of my projecting, the full biopsy report wasn’t back yet. Melissa reiterated that the part that was in looked good. My platelets were still really low, but at least they had gone up (to 45) and not down. The white count, due to the shots, was normal, at 5.7. Surprisingly, my hematrocrit was down to 24.8. I really had been feeling fine, and even had a good doubles game on Saturday. I guess I was running on reserve power.

So, it was time for a transfusion. About mid-way through the first bag, I developed hives, which necessitated a dose of intravenous Benadryl. The hives calmed down, but, as Queen of Rashes, I was not surprised when I developed a few more hives during the second bag, necessitating and more Benadryl.

I could barely keep my eyes open; driving home was now out of the question. I called Diane, who came and rescued me. By then it was dark out and we were basically the last ones out. David (her husband) dropped her off and she drove me to her house (nearby in Newton), where I spent the night.

My techniques had served me well during the long day, but I was exhausted, and the Benadryl put an end to the chattering for the night.

Saturday, October 18, 2008


I dreamt I had straight shoulder-length hair that my hairdresser had colored with a henna rinse.

I danced around to show it off to my mother. "Should you have done that?" she asked. "It will rinse right out," I promised. My mother looked worried, and then I grew worried too.

"Don't tell my oncologist!" I said.

The hair dreams weave in and out of my sleep. In all of those dreams, my hair is longer and dark. I am usually surprised and pleased. Other cancer survivors have told me of their similar dreams.

I often dream about storms, about running from high waves threatening to engulf me. Or I dream that I am driving my car and not totally in control. I try to squeeze into small spaces. I go too close to the end of a cliff. I get stuck in reverse and struggle to get out.

The other night I dreamt that I was at a picnic. I looked up and saw dark clouds shaped like a twister. I tried to get everyone to run and hide. But they said I was over-reacting. I took a chance and came out from where I was hiding. The twister disappeared. The sky was still dark, but the threat of disaster was gone. A light ran began to fall, and the other picnickers looked at me as if to say, "We told you not to worry."

Last night I dreamt I was driving but couldn't keep my foot securely on the pedal. My new clogs were making it hard to connect. I drove into a corner and wasn't sure how to get out. I backed out and put the car in drive. By accident I drove onto a plank that sent me ricocheting into the air. I flew through the air and landed safely.

So transparent. So hopeful.

I wonder what recurring dreams other people have.

Friday, October 17, 2008

Woudda coudda shoudda

In all my concern over my lowered counts, I didn’t dwell much on the fact that Oct. 15 would have marked one year out of transplant if my graft hadn’t mysteriously failed at six months.

I did, of course, think about it.
It would have been my second new birthday (following my first new birthday, my auto transplant, now my non-birthday, on Sept. 18, 2003).

If I hadn’t backpedaled, I would have learned who my donor is. I would feel the relief of having the experience be one whole year behind me.

Plenty of people are saying woudda coudda shoudda over their stock market purchases. "I would have," "I should have," "I could have" are words that people often apply to troubling events in their lives. Everyone knows it’s a waste of energy. It’s something we as cancer survivors must try especially hard to avoid. Other words are just as problematic, for example, “if only….” And “what if….”

“If only I hadn’t gotten cancer….what if it comes back…” They’re all part of the same non-productive way of thinking.

Emily did have a good “woulda” about my one-year-annversary that wasn’t.

“You would have been getting ready to go back to work,” she pointed out.
So true. I like my job writing for a newspaper, but there are countless benefits to staying home. I’ve spent more time with my kids than I ever would have. I can read the newspaper all morning. I can read books at my leisure, walk with friends, watch the dog swim, enjoy the mid-day sun that I missed in the office, and take a nap without feeling guilty. And now that I’ve discovered blogging, I can send my updates into the blogosphere and get support and feedback from people I know and friends I’ve never met. And I can send out support and reassurance in return.

Quick update: Today was the day to call Melissa for the results of the CMV test and the bone marrow biopsy. I didn’t want to get out of bed. Mary called and I told her I was lying there with the quilt over my head, imagining bad things…that Melissa would say the results were bad, or that she might even say they weren’t in, when in fact they might be in but were so bad that she wanted to tell me in person. Woa.

“Stop making scenarios,” Mary said. “Get up and make some pancakes and some strong coffee.” I told her that my mother used to come wiggle my toes and say, “Get up, get up.”
“Mary,” I said. “Tell me to get up.”

“OK,” she said. “Get up, get up, get up.”

So I did. I added half an Ativan to my morning pills, and when my heart stopped beating fast, I called Melissa.

The CMV was still negative. Only half the bone marrow results were in, and they looked fine. The chimerism and the rest would not be back until Monday. She said to stay on the Valcyte, because if I go off too quickly the CMV might come back.

I think I can deal with that for now. The sun is shining. My friend Barry is coming for a walk. The dog is lying in a patch of sunlight on the dining room rug. Soon she’ll be racing around in the lake. I’m going to see if I can get through the weekend by being a good Scarlett O’Hara.

I’ll think about it tomorrow. (Or the next day or the next day or the next.)

Wednesday, October 15, 2008

Yesterday I was a pin cushion

I was nervous driving to Boston, but I calmed myself by listening to the news and playing a CD on healing after transplant. I’m sure you’re not supposed to listen to this guided meditation while driving, but I never seem to get around to it at home. I drank strong coffee as I listened, an antidote to sleepiness and also, possibly, to the intended relaxation effect. But it helped me enter the clinic in a positive state of mind.

My counts were, sorry about the pun, a downer. The whites, thanks to the shots, were 2.9, close to normal. But my platelets had fallen to 39, and my hematocrit was 26, close to the point of needing a transfusion; I took the shot instead and we booked time for a transfusion in case I need it next week.

Melissa said not to panic. She’s seen counts drop this way before from a combination of CMV and Valcyte. And I only just tapered off the Valcyte and only just tested negative for the CMV, so it would make sense that my counts would still be reeling.

She suggested a bone marrow biopsy to get a more clear picture of what was going on, including a better reading of the chimerism than what you get from a blood test. She went out to get the procedure room ready, leaving me alone with my thoughts. My mind can be a terrible place to be; I think it took about five seconds for me to write my own ending. When she came back, I asked if they were looking into possible relapse. She reassured me that they did not believe that was the case. My mind also kept jumping to the possibility of graft failure, and I tried to pull it back from the ledge.

Across the hall in the procedure room, I changed the subject before climbing face-down on the table. “Did you see my clogs?” I asked and stuck my foot out for inspection. They were clogs with backs, like the ones she had worn the week before. “I copied you,” I said. As she got ready, we chatted for a couple of minutes about the search for the perfect clogs and about our kids. The bone marrow biopsy was, as usual, not the most pleasant experience, and I felt shaky afterwards. But I’ve had so many that the discomfort is no longer a shock, with makes it easier to tolerate.

After that, I got the shot of Aranesp and made an appointment for next Monday.

Margaret, who was downtown on business, met me for a quick walk. She knows how I think. “You just have to live one day at a time,” she said. “It’s the same for all of us. This day is really all we have.”

She said I should also try hard to stop over-thinking. “Just put your trust in your doctors,” she said. “Picture yourself in the palm of their hand…little Ronni sitting at the beach,” she said, cupping her hand and adding that if I wanted, I could also picture that as God’s hand. “Your knowledge is wide, but it is shallow,” she added. “Theirs is deep.”

Fortified by our visit, I made a quick stop for a touch of retail therapy. I haven’t bought any new furniture for years – probably more than 20 years – and in fact I have the same off-white Danish design couch that I got for my first apartment. I’ve been cleaning out, giving stuff away, and moving furniture around. I haven’t been in a store in ages, and I was gripped by the need browse. I would, of course, wear a mask and not stay too long.

Diane met me at the Chestnut Hill Mall. We were talking about hair when we entered Bloomingdale’s. “I like your hair this way,” she said.

“I think I might need it cut again,” I said. “But then I start thinking, ‘Why bother if I might end up back in the hospital in a few weeks?”

Diane had a great answer. “Don’t go there,” she said. “You’re not there. You’re in Bloomingdale’s.”

Sunday, October 12, 2008

It takes practice to turn off the worry switch

My worries took a hike when my hairdresser, Robin Thibault, trimmed my hair outside the salon recently.

Melissa called on Friday to say that the CMV test came back negative. Yay! That is now removed from my worry list. I will get my counts checked again on Tuesday to see if they’re coming back up.

I am definitely relieved, but once the worry switch goes on, it is often hard to turn it off. My counts should come back now that the CMV is gone, I’m tapering the Valcyte and giving myself Neupogen shots. Yet it is hard to totally shake the fear that they won’t come back and that I might be heading towards graft failure again.

There are things I can do. For the white blood count, I am giving myself the shots. I don't really know if my diet can have a big effect on my hematocrit, but I am eating more iron-rich foods just in case: Total for breakfast, some kind of red meat or chicken and leafy greens for dinner, and oranges to help the blood absorb iron.

As for the platelets, there is nothing to do, and that lack of control tends to lead to anxious checking. For example, when I give myself the shot, I check to see if there is more than a tiny dot of blood, because a drip might signal even lower platelets. So far, so good.  My nose was running on and off today, and I quickly dabbed to see if I had a nosebleed, a symptom dating back to the bad old days in May when my platelets were about 4 and my nose bled frequently. No nose bleed. And, no new bruises.

The best thing to do, of course, is to change my focus, which, on and off, I did pretty well during this beautiful weekend.

It takes practice, though, and I am going to practice by ending this post on a totally different topic, one that is never far from my thoughts: hair.

It’s a topic that resonates for most women, and I assume some men, after chemotherapy. I don’t really know how men feel about it, but I have to imagine it’s easier, because a bald guy can just look like a guy who happens to be bald, but a bald woman looks like someone who’s had chemo.

When my hair started growing after my first treatment in 2003, I frequently poked my head into the hair salon and asked my lovely stylist, Robin Thibault, “Is it time?” Finally it was time for her to trim an unruly few hairs. There wasn’t much to do, however. I had curly hair as a child, but when I grew up, my hair was wavy. After treatment, I had crazy curls and cowlicks. I tamed it with hair wax, and later with gel, and finally it got back to normal.

This time it grew back in curly too. Many people told me it looked great really short, and for a while I thought of keeping it that way. I even wrote a blog post about the significance of my decision. But over time I changed my mind. I want my long hair back because it makes me feel more like me.

The longer it gets, the more help it needs, especially on a humid day. On many days, I use clips to hold down my “wings.” I’ve used headbands (kind of silly looking) and baseball caps (which give me hat head). The day Katryn took my picture on the beach, the wind was blowing it all over the place – mostly straight up, making me feel like Marge Simpson. (The height, not the color.) It settled down after I put my sunglasses on my head.

You can’t just let it grow without getting it trimmed. Recently Robin pulled a chair out in front of the salon so that I wouldn’t have to be inside wearing a mask. She shaped it just the tiniest bit. I’m not sure anyone but me could really see the difference, but the haircut made me feel part of the normal world, and it took my mind off my worries.

Thursday, October 9, 2008

Counts were down and I'm not too happy

I apologize if you are tired of reading about my CMV. I’m getting a little tired of it myself.

Went back to the clinic today to recheck the CMV; the results will be back in a few days. As expected, my counts went down again. They were down so far that, despite being prepared, I was a little shaken up.

My white count was down to 0.7 (normal is 3.8 to 9.2). Not too long ago, I was so proud when I went into the 3’s for the first time in ages. “I’m almost neutropenic!” I said to Dr. Alyea. He explained that low white counts post-chemotherapy – when I was neutropenic in the hospital – are different from when you’re this far out. People walk around with counts like mine and do OK. He did say to restart taking Neupogen shots, or GCSF, to raise my white blood count. I happen to have two boxes in the fridge, left over from the days when my counts crashed six months after my first allo.

My platelets were also down (74), hematocrit was down to 27.3 and hemoglobin was down to 9.6. Actually, I feel fine, and they said I looked fine.

Dr. Alyea said there were two good reasons for the drop: the CMV and the Valcyte used to treat it. Still, he said, he needed to be vigilant, because back in April when my counts took a big dip, graft failure followed. He said not to panic. My latest chimerism, from Oct. 2, was still 90 percent donor – a good place to be.

The plan is to continue the Valcyte and see where the CMV level comes in. If it is still the same, I could switch to one of two antivirals that need to be administered intravenously but which do not lower counts.

A bit of post-traumatic stress kicked in. Low counts bring to mind bad outcomes. My mind immediately went off in this direction: What if I am cured of the leukemia and something else does me in? I know this is a common thought pattern because I’ve seen it on other blogs. I’ve also followed these blogs long enough to see that the complication is taken care of in most cases. I also can think back to a situation where my low counts did not signal anything bad; I was on Valcyte once before for CMV. My counts went down, the CMV went away, I went off the Valcyte and my counts bounced back.

So…I didn’t panic, but I did feel deflated. Big sigh.

When I got home, I quickly put on sweatpants and walked the dog. It was late in the day by then, but still balmy. I bumped into Carol, a good friend from work. We go back 30 years and have been through a lot together. Carol was walking with her niece. They got a caffeinated earful. Carol offered her support and a big hug.

On the way home I passed the fire station and waved to the fire chief, Bill, who was standing in the open bay. He waved back.

A car pulled up alongside me. It was a woman who wanted to know where I had gotten my dog. She said she has a chocolate lab who looks just like mine – small and sleek. She thought they might be from the same litter, but they aren’t. We agreed to introduce them if we bump into each other at the lake.

Life was already gently pulling me along. I came home and gave myself the shot. I watched “Hardball” with Chris Matthews and then, at 8, switched to Comedy Central for last night’s installation of “The Daily Show.” I laughed until my eyes filled with tears.

Tuesday, October 7, 2008

Playing tennis with CMV on my mind

Yesterday I checked in with Melissa to see if the test for CMV was back, in hopes that it would be gone and I could start tapering the Valcyte, the probable culprit in lowering my counts last week.

The CMV was the same. She said I should come in this week to have my counts tested instead of going onto the two-week plan. So, I go on Thursday.

My mind went in a bad direction. I looked up CMV again (I’m not sure why, because I already had looked it up) and saw that it can cause disease and even death in immune suppressed people. Post-transplant patients and people with AIDS represent the highest risk. CMV can also lead to eye infections, which, if they get out of hand, can lead to blindness. I hope nobody with CMV reads this and gets freaked out, because I assume that most cases, when caught early like mine, lead to nothing but a little diarrhea and inconvenience.

This is where the Internet does not come in handy. If you look up pneumonia, you will learn that it might kill you...but in most cases it probably won't. Look up anything and trace it to its worst-case-scenario, and depending on your mood and vulnerability at that moment, you will either dismiss it or get paranoid.

After I talked to Melissa, darkness fell and the night goblins came out. I almost called my good friend Vytas, who had been one of my nurses at Brigham and Women’s Hospital, and who has fielded many of my questions over the years. I wanted to ask, “Do you think I’ll go blind?” I felt like I would sound crazy, so instead, I finished the conversation in my mind. “Helllooooooo,” said Vytas-in-my-mind. “No, you are not going to go blind.”

Instead, I treated myself to countless Oreos and half an Ativan.

In the light of day, everything seemed better. I had my Tuesday morning tennis lesson with George, who is an incredibly talented teacher and a hoot.

After initially resisting the forehand loop last week, I had looked it up on the Internet, watched a video, read the instructions and became convinced. I did it almost every time. George beamed. “You’ve reprogrammed yourself,” he said. “I’ve put another looper out there.”

Would that we could reprogram some thought patterns so easily.

We then worked on my backhand volley.
“Hold your left hand on your racquet until the last minute,” he said. “If you let it go too soon, it’s like you’ve let go of a child’s hand and you don’t know where he’s going to run off to.”

Keep both hands on until just the right time, he said, “until one hand says to the other, you’re ready to go.”

I love the way he puts things.

Then he said he wanted to show me something new on my backhand groundstroke. (I have a one-hander.)

He came over to my side of the net and demonstrated…a backhand circle! I thought I had put in my dues with the forehand.

George said that if I wanted to advance to the next level, the backhand loop was the way to go. And he said I showed that if I could do the forehand, I could do it on the other side. “Go on the Internet and watch Roger Federer do it," he said.

We tried about a dozen. Some went over, some did not. It felt weird.

“It’s hurting my brain,” I said.

George looked at me quizzically. “Nobody ever said that to me,” he said.

I guess that makes me unique. In any case, I had changed from the CMV channel to the tennis channel.

Sunday, October 5, 2008

Once a hockey mom, always a hockey mom

All of this talk about hockey moms has made me think about all those years of getting up early, freezing my fingers and toes off, cheering for Joe and his team, traveling to tournaments and games, bonding with parents and waiting in warm rooms.

It has also made me think about how we are not a monolithic group. When politicians direct their remarks towards hockey moms -- apparently a tougher version of soccer moms -- they seem to have a specific audience in mind. But actually these moms are all over the place, politically, culturally and geographically.

I never knew from hockey. Never watched a game. My first exposure came when Joe, circa age 5, watched “The Mighty Ducks” over and over and over. So fascinated was he with this kid hockey movie, I finally asked him, “Would you like to try that?”

"Yes Mommy!"

I had no idea what I was getting myself into. Years later when I groaned at pre-dawn practices and, when he got older, practices that got him home at 11 p.m. on school nights, I knew I had only myself to blame.

It all started when I took him to learn-to-skate and he wobbled around on the ice. He was afraid to cross all the way over, so the instructor told him to crouch down and then he gave him a ride.

He progressed from Squirts to Mites to Midgets to Bantams, and then played on his high school team. It seems like one minute he couldn’t tie his own skates, and the next he was dashing across the ice and, later, performing what looked to me like acrobatic feats when he became a goalie. (If he reads this, I hope he doesn’t get angry with his proud mother.)

My own skating was nothing fancy. Growing up, I skated after school during public ice time at Madison Square Garden, and on weekends, my sister and I skated in Central Park at the Wollman Rink with our father. We went round and round, swinging our arms to the tune of waltzes, and going at a pace that felt pretty fast. Afterwards, the little round pizzas and the hot chocolate tasted wonderful.

When I ended up on the ice at a parents vs. kids game with Joe, I learned what fast really was. Some crazy fathers took it too seriously, skating so fast and recklessly that one of them knocked me down. I heard my knee-cap crack, but it ended up only being a bad bruise. Years later when I walked onto the ice and Joe skated over with a rose on senior day, I half expected some other mishap. The only thing that happened was that my eyes filled with tears...the good kind. But I digress.

I was also a soccer mom and softball and baseball mother, and enjoyed all those roles too. They all require a similar amount of dedication, but in different ways. Ben (now a sportswriter and assistant sports editor at The Trentonian, a New Jersey daily) and Joe both lived for baseball, and our life centered around getting to their games. Same goes for Katie's soccer and softball.

Baseball moms actually need to be as tough as hockey moms, but nobody seems to mention them. We sit/stand for hours in the heat and cold. We run into our cars during a rain delay and wait there until we find out of the game is called. Including travel time, we can spend half a day at a game. Once when the season changed from hockey to baseball, a fellow hockey mom whose son played baseball with mine turned to me and sighed, "Bring out the zamboni."

At Bates, Joe still plays hockey. He is a goalie on their team, which competes in the North Eastern Collegiate Hockey Association (NECHA-B), a regional division of the American Collegiate Hockey Association's Division 2. Since I have been sidelined by illness and recovery, I have not gotten to any of those games.

He didn’t take his equipment back to school with him in September, because the season hadn’t started it yet. I don’t have a good place to put the humongous goalie bag, so it is lying on the living room floor under my late mother’s piano, framed by his goalie pads. The stick is still outside the front door, where it landed in May.

So who is a hockey mom?

She’s someone who loves and supports her son or daughter through good and bad games and early and late practices. She’s someone who rushes over with the asthma medication when her child is playing through a cold and comes off the ice short of breath. She is someone who walks around with frozen feet after a game and doesn’t really care.

She's someone who doesn't mind the goalie bag under the piano because it adds a little something special to the living room decor.

She’s someone who leaves the stick outside the door because it reminds her of the good old days.

She's someone who might identify with the messages of either party.

Thursday, October 2, 2008

Counts were down, but my spirit is steady

I had my clinic visit today instead of my usual Monday.

I started the day by meeting nurse practitioner Mary Jane Ott for Reiki at Dana-Farber's Zakim Center for Integrative Therapies, in keeping with the plan that many people have: Try to add a little something nice onto your clinic visit. I’m not exactly sure how Reiki works, but I do know that it makes me sit still and concentrate on my breath. When we're done, I always feel more relaxed.

I expected my counts to be down, and sure enough, they were, because I am still taking four tablets a day of Valcyte to combat the CMV, or (cytomegalovirus), which affects people with weakened immune systems.
White count was down to 1.5 (after I was so happy to get into the 3’s just weeks ago), and platelets were down to 90, the first time in a long time that they dipped below 100. My hematocrit held steady at 30.3.

Dr. Alyea said he was sure it was from the Valcyte. Since I’ve seen the same thing happen when taking this drug before, I wasn't worried.

But I was not happy, either. Lower counts are not anyone's fault, but when I look at the printout, I somehow feel like I failed a test. I would rather be like the proud kid who puts his or her report card on the fridge. Instead, the printout is stuffed in my bag.

Alyea said the virus was responding to the Valcyte, and if I tested negative this week, I could start decreasing. If not, I’ll have to continue, and my counts might even go lower.

He asked me if I was playing tennis, and I said I was taking lessons with our coach, George. We had a short talk about lessons – his golf lessons and my tennis lessons – and both agreed that initially, they can make your game worse, probably because you're thinking too much or trying too hard.

I told him that George didn’t have any pity on me; when I tell him I’m tired, he either advises breathing through my nose because it’s more efficient, or slicing the ball more. “Slicing will get you out of any problem,” is George’s motto.

I thought perhaps that the doctor might disapprove and say that if I was tired, then I should stop. But, he said, “That’s great!”

Once I get going on the tennis topic I sometimes don’t know when to stop. My inner censor told me that there was a waiting room full of patients, and I should stop gabbing. But I was already going, so I also told him that George was making me work hard to forgo my normal forehand in favor of the circle swing, or loop, that is now the preferable motion.

Dr. Alyea wanted to know what a circle swing was. I got up and demonstrated with a full sweep of my arm – a circle – instead of just bringing the racquet back. He looked puzzled and agreed with me that the circle didn't look very efficient.

He ended the visit by telling me to decrease my tacrolimus and sirolimus, adding that if the CMV was gone he or Melissa would call.

As he was walking down the hallway and I headed the other way to the appointment desk, he looked over his shoulder at me and said…drumroll… “I wouldn’t do that circle swing if I were you.”

On the way out, I went to Starbucks for my now-habitual coffee, another post-visit treat. I waited on line next to a fellow masked-and-gloved- person. (By the way, if you’re from New York, you wait ON line; everyone else waits IN line.) I bought a bag of decaf to take home, plus a tall coffee to go. The young masked man asked me what variety. I told him it was espresso.

“I don’t drink Starbucks at home,” he said. “I only get it when I’m out.”

He explained that he used to live in Alaska, where he drank a local brand from the K Bay CafĂ© in Homer, Ala. He’s so loyal to the brand, and he likes it so much, that he now orders it by mail.

We left the line and chatted for a few minutes. He is 45 days out of transplant for AML, and he is also being treated by Dr. Alyea. He asked me how far out I am. I’m trying to come up with a quick answer. (“How far out from which transplant?” I want to ask.) Also, I didn't want to even mention the r-word (relapse) in front of this young man who just finished treatment.

So, I said, “I had an auto five years ago and it didn’t stick, so now I’m about 100 days out of my allo.” No need to give him TMI about the graft failure with my first allo and explain that this is my second allo and third transplant overall.

We chatted for a few more minutes about our habit of carefully watching the servers to see if they’ve touched the lid too much, and then wondering if it’s OK to ask for another lid if we’re not happy. Then we wished each other luck and headed back to pick up our cars.

It was nice to be talking to the doctor about tennis swings and to the fellow patient about coffee brands. Just normal things. Nothing life-altering.

Wednesday, October 1, 2008

There are many ways to observe a holiday

I still have hydrangeas! They beautified the holiday table.

Yesterday, the Jewish New Year, I was reminded that there are many ways of staying connected.

In the previous post, I talked about wanting to go to relatives’, yet, at Day+110, being worried about germs and fatigue.

I decided to stay put. Just because I’m now allowed to go into other peoples’ homes, I still should be cautious. I want to thank everyone who called, e-mailed, posted comments or reminded me in person that I would be OK if I stayed home.

I also decided that I would invite friends over for a little holiday meal Tuesday night. In keeping with my theory that doing something different keeps your mind off your troubles, I planned to make the traditional round challah from scratch. Also on my menu would be Nach Waxman’s beef brisket, from “The New Basics” cookbook by Silver Palate authors Julee Rosso and Sheila Lukins.

When I got the ingredients, I also purchased a honeydew melon and honey cake for a sweet New Year.

Monday after school, I put Katie on the train to New York, where our cousin Serena would meet her and go with her to services the next day. (How did parents do it without cell phones? We talked after she switched trains in New Haven and after Serena met her at Penn Station.)

Then I took a walk and thought about the past and the present. As I said before, I'm not especially religious, though I do like to think I'm spiritual. As I walked around the beautiful lake across the street on the Mount Holyoke campus, I worked on quieting the chatter in my mind, which gave me a greater feeling of connection.

I went home and did the first step in making the brisket, which I would continue cooking on Tuesday. My cousin Betsy’s husband Michael had reminded me via e-mail of a basic reason I shouldn’t go anywhere: “An important concept in Jewish law is to sustain your health and all else gives way to that.” He said they would put me on speaker phone at the holiday dinner I used to attend with my parents.

That night, while the homey smell of cooking brisket filled my kitchen, I “participated” in the holiday dinner being held in Queens. I listened, and talked, via speaker, while they said a few prayers for the holiday and a “misha beirach” prayer for healing in my name and that of another relative who has been ill. Then they passed the phone and I talked to everyone.

Meanwhile Katie and Serena had met Ben and the rest of the New York contingent at a restaurant. (Hmmm, I guess I should say “Manhattan contingent,” but to me Manhattan is New York.) They passed the phone around and I talked to everyone there.

Having already made it through Monday without experiencing what my sister calls the “bare light bulb feeling,” I started out Tuesday in a good mood. First, I exercised. (OK, true confession, I played tennis.) Then I sort of lollygagged with the newspaper, until my mother’s voice told me, “If you’re going to have people over, you need to GET GOING.” Right. I made the challah and was quite proud when I braided it and it did indeed look like a challah.

Phone calls came from the 212 area – my parents’ friends wishing me a healthy and happy New Year.

I set the table with care, picking the lingering blue and purple hydrangeas from my garden. I put out my mother’s plates with the pretty flower design. My friends Deb and Mary came, as did Mary’s son, AJ, and her husbnd, Jerry. We lit a candle and said the blessings. As I cut into the challah, I heard my father explaining, as he loved to do, “The challah is round for a year with no sharp edges.”

The dinner conversation was lively and filled with good cheer.

I did not feel alone at all.