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.”

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.

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.

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.

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.

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 Café 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.

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.