Monday, December 29, 2008

'This will only hurt a little bit'

Tami, one of my high school friends, was in the area today, and she spent part of the day with me. She came with me when I got my lung biopsy, and kept me supplied with tissues while I coughed up blood for about an hour afterwards.

This was a biopsy guided by CAT-Scan. The handsome doctor, who looked not much older than 20 (why do they keep getting younger?) said it would not hurt. Ha. It was like a bone marrow biopsy only not at the base of your spine but in your chest.

He also said I would need to return for an x-ray in about two hours, because he might poke some holes that were a little too big, leading to a collapsed lung. “Maybe you could try not to do that,” I said. He assured me that he would do his best and said that if the lung did collapse, they would put in a chest tube. Okkkkaaaaay.

He numbed several areas of skin on my chest and then went in to get samples of what appears to be a pretty large mass on my right lung. I didn’t look at everything he was using, but I saw him use a needle for an aspirate. He stuck some other probes in and wiggled them while I lay in the machine, apparently so he could get the exact spot. I couldn’t even do relaxing breathing, because he had warned me that at any time he might need to say, “hold your breath.” If I was at a nice cleansing outbreath, there wasn’t much left to hold.

In any case, I survived, though the next hour was difficult with the coughing up of blood. The blood finally stopped, but hours later I am still having trouble breathing. It’s nothing terrible, and it is worse when I’m on the phone, so I tried stay off the phone tonight.

The biopsy is supposed to show exactly what is causing the pneumonia. Hopefully something will grow in a few days so they can target it with the right antibiotic or antifungal.

Tami (known as Tamar to her friends from adulthood) had breezed in this morning with a smile, only to be met by Ms. Doom and Gloom. I muttered about death, finding that actually saying some of my thoughts out loud took some of the power away from them.

Tami then used her no-nonsense, I-mean-business Tami voice.

“I’m sick and tired of the D-word,” she said. “I don’t want to hear it anymore!”


It was great spending the day with her. I think she may have given me a jump-start.

Sunday, December 28, 2008

A week in the hospital

I started the blog to tell some stories, reach out to others and hopefully entertain while providing some useful information on healing and coping. I went into the hospital shortly after, and I dropped the blog. I didn’t feel like writing it. And I figured the only people reading it were the ones I had corralled. Then I came home and found out that PJ, in many ways my doppleganger, had been reading it. I found out that there were others, too.

So now I can’t drop it. I don’t want to write a succession of posts reading, this thing happened, that thing happened, WTF, why is any of this happening. The idea is to send out good, not bad energy. Well my last post didn’t send out good energy, but it brought a lot of good energy in. (Thanks, everyone, it really helps.) I guess I’ll just keep telling it like it is, and tell you I’m trying to get back in touch with all the things that helped me cope up to here. I think I’ll start by remembering to breathe.

The days have blurred together, but here are a few things that have been happening. It took a few days and a parade of doctors to figure out what to do about the pneunemonia. It’s probably fungal, because the past few times I’ve come in here, I get the fungal ball on my lung. The pulmonary people came in, listened to my chest and suggested a bronchioscopy, which involves putting a tube down your throat. They also said a Video Assisted Thoracic Surgery, or VATs, would provide the information on whether this is fungal or bacterial. I had already had a VATS years ago, and it involves a long, painful recovery, so I nixed that option. The bronchioscopy went away by itself.

Next the ID (infectious disease) people weighed in. I wanted to talk to Dr. Marty, my favorite ID doctor, who’s followed me from the beginning and who makes me laugh. I found out he was away until tomorrow (as are many of the doctors, like usual around major holidays). They said he’s not on service, but he knows of my situation and will stop by.

They should really find a better way than having a parade of doctors poke and probe and float their theories on the patient. I love having all this knowledge on my side, but I want them to share their ideas with my doctor, who will present me with a plan. My “visitors” wore me down. It was irrational to cry over Dr. Marty’s absence, but it was the last straw. I burst into tears, feeling like a little kid.

I had a trainee nurse that day who did everything by the book. I asked her for an Ativan. “Are you just generally anxious or is it something specific?” she asked sweetly. Homicidal rage time. DON’T MAKE ME EXPLAIN! I thought. NOBODY HERE MAKES PATIENTS EXPLAIN WHY THEY WANT AN ATIVAN! In reality, I told her it was generalized anxiety, and I got the Ativan.

Anyway, there is a plan. In the morning I'll get platelets, followed by a CT-scan biopsy to get a sample of the matter on my lung.

In the meantime, I got a PICC line inserted in my left arm and went down to have it x-rayed to see if it was in the right place. It needed to be tugged down a few more inches, and when the nurse did it, I saw that there was a cut on my arm where some of the tubing enters. I told her I had low platelets but she said she didn't need to apply extra pressure. When I returned to x-ray, my sweatshirt and shirt were soaked with blood. I was pushed quickly back upstairs in my wheelchair, and the bleeding stopped after the nurse applied pressure.

Then I almost killed my MacBook. I had left it on top of the mini fridge, only to discover that (duh) it’s not a good place for a computer, due to condensation. When I picked it up, the bottom was wet, and it wouldn’t start.

I’m not an electronics enthusiast. My view ranges from necessity that I must put up with, to downright maddening piece of junk that will only cause me trouble. But I love this little Mac. (No, they didn’t pay me to write this.) I fell in love with its sleek simple design and the light touch of the keyboard. I rescued mine by wiping it with a white towel and re-charging it. Suddenly it came to life! The Mac was saved! So I guess there was something good to report after all. See, I'm trying to be more positive. I'll work on it some more tomorrow.

Thursday, December 25, 2008

Downhill all the way

I am sorry to have neglected the blog. It’s been a terrible week. I felt really sick all weekend, and when I called Dr. Alyea Sunday, he said to go to the Brigham and Women’ emergency room in Boston, from where I would get admitted. He also said he was sorry to tell me on the phone, but the pathology report on the bone marrow biopsy report showed that I had relapsed. I had to get to the hospital in a snowstorm, so I didn’t have time to digest it. I still haven’t digested it.

As I said, I felt sick for most of the weekend, but by Saturday evening I felt a little better. I walked the dog and even made cookies. When I was putting the first batch in the oven, I felt like I was going to faint, and slipped down onto the floor. Joe was out; Katie was uptairs. I wasn’t sure I could make it to the bottom of the stairs, but I did, and she came down and finished making the cookies. Then we ate them and watched “Fred Claus.” I only mention these things because of he incongruity: cookies and “Fred Claus” one night; relapse and hospital the next.

The bag that I had packed on Thursday remained unpacked, so I grabbed it and left uncharacteristically quickly. Joe drove to Diane’s in my new Forester (free ad here: thank you Subaru for such a good car), and then Diane and I went to the hospital.

I’m not sure what the plan is for me. First order of business is finding out why I have a fever (or not finding out and hoping it will just go away.) I am on a ton of antiobiotics and on an antifungal because there is something on my lung, which could be either bacterial or fungal.

I can’t write too much more now because I am lucky enough to just find the keys. It looks like I will get another “mini” transplant, though I couldn’t get any serious chemotherapy because there is so little in my marrow and it wouldn’t recover. I have been in such a fog that I can't remember what Dr. Alyea really said and what I dreamt he said. Hopefully I will be more lucid the next time we speak.

So, three weeks ago I was soaring on high counts. Now this. The mind gets stuck on it, uselessly. You could do it for anything. One minute the car was going slowly. The next minute it is acceleratorating and runs a child over. One minute the marketplace is full of lively people. The next minute it is devastated, blown up by a suicide bomber.

I have been crying a lot, picturing myself at the end of the road. Thinking I won’t see my children finish growing up, won’t see my grandchildren. I guess this is my mind’s way of going through the mourning process; I hope to get to the acceptance phase soon.

I wandered over to 6A (my home for the last transplant) from 6C (where I am now). Myra, a wise, funny nurse, who's been doing transplants for ages, knew what had happened. “Well, you have 48 hours to have your pity party, then you have to quit it and put on your fighting gloves,” she said.

Thursday, December 18, 2008

Biopsied, transfused, and still wondering

Joe drove me to Boston today. I was glad to have his company, and it helped undercut my anxiety. Still, with the way things have been going, I took a pre-visit half an Ativan (.5 mg) in the car.

Thanks to everyone who called, e-mailed or commented on the last post. The support in general really helped, as did the suggestions on how to get my mind off my worst fears.

The counts were not better today, unless you consider the hematocrit, which was 25 after Monday’s transfusion. This was still below normal but high enough to avoid a transfusion. My white count was .6, which is quite low. I knew my platelets were very low, due to the red pinpoint dots (Petechiae) that were making my legs resemble a pointillist painting. Not to mention the blood (sorry!) that kept building up around my gums. (“Not to mention” is one of my pet peeves. I always think, “If you’re not going to mention it, then why did you?” But, hey, it’s my blog and I’ve had a hard week and I feel like breaking a rule.)

I packed a bag, expecting to get admitted into the hospital. This might have been a reverse way of trying to stay out of the hospital, because when I was admitted six months ago, I didn’t take a bag. Well, I was not admitted. I’m sure that the bag didn’t have anything to do with it, but, whatever.

As I’ve said, I really have no interest in knowing my numbers when my platelets are extremely low. Today I found out by accident. I went into the infusion room in search of the lunch cart, and I bumped into my nurse from the other day. I told her that my blood counts weren’t back yet, but that I thought my platelets were still low. “Well, they were only 2 the other day, so I’ll just get the order going,” she said. Two? When they were 164 (normal is 155-410) just a few weeks ago? Another place not to go, as in, “That tree that looked so sturdy yesterday went and fell on me today?”

After my bloodwork and while I was waiting for my appointment, a group of high school carolers wearing Santa hats and reindeer antlers came into the waiting room and started singing the standards. “Tis the season to be jolly,” they sang, along with “Rudolf the Red Nosed Reindeer,” “Silent Night” and others. Sometimes a harpsichordist or other instrumentalist plays in the outer waiting room that is usually not so packed. This is where these kids belonged, where people could wander over and listen if they felt like it. It was through no fault of their own that they ended up crammed in almost on top of the patients; somebody put them there in what seemed like an exercise in cheering the patients up.

But you could see that many, like me, were having a hard enough time keeping it together. One woman moved further away. I took the other half an Ativan and opened up Joe’s early Hanukkah present to me, “Born to Kvetch: Yiddish Language and Culture in All of its Moods,” by Michael Wex. I'm just starting the book, which begins with a discussion of the satisfaction that Yiddish-speaking Jews long ago derived from kvetching, or complaining: “Kvetching becomes a way of exercising some small measure of control over an otherwise hostile environment.”

OK, forgive me, I kvetched, but only in my head and now in print. I was extremely on edge. I just wanted to stay inside my bubble.

I talked to both Melissa and Dr. Alyea today. They said the low counts could still be from the virus and drug reaction, or, as Dr. Alyea had already said, they could be due to the same thing that happened before: some part of me starting to push the donor cells out. So, for all my talk about not being hit by a bus in the same spot, it actually might happen.

The chimerism from recent blood work, showing the percentage of donor, is still not back. After I got my platelets today, Melissa did a bone marrow biopsy, which will provide a clearer picture. I began to relax a little when Dr. Alyea started discussing possible options, which I will leave to a later post. I think some of us get to a bump in the road and write ourselves off. Using one of my late father’s favorite words, I told them I had been imagining my demise. (My father kept a folder labeled, “In case of my demise.”

Dr. Alyea said he did not picture my demise. “I picture you playing tennis with a high platelet count,” he said.

I am so drained from worry and anxiety that I think I can let it go for now. There are options. My demise is not imminent. A storm is coming, and I have a date with a friend to drink coffee and watch our dogs play in the snow. That should be fun.

Tuesday, December 16, 2008

Spending some uneasy time in limbo

My counts were still low yesterday: WBC was 1, hematocrit was 24, and platelets were down at the “don’t ask, don’t tell level.” I know I could ask, but for some reason I get especially rattled by low platelet levels.

I got platelet and blood transfusions, with 50 mg. of Benadryl and a steroid to stave off a platelet reaction, and ended up staying the night at Diane and David’s, this time being rescued by David because Diane was out of town.

It also appears that on top of the already low white count, I may have a virus that is further suppressing my counts. I've had an on-and-off low-grade fever, but I feel OK. Yesterday they sent out some blood samples. So the primary suspect is the CMV, the Valcyte and now a new virus, and when the virus goes away my counts should come back.

There is also the possibility that some of my donor cells are going away, but the chimerism evaluating the percentage of donor cells is not back yet. If that happens, there are things that can be done. I am trying not to go there, although, as I have written before, I am spooked by the timing, since I was just about where I am now – six months out – when I lost the graft. I also know the unlikelihood of being hit by the same bus in the same spot. I need to keep believing it.

Over the weekend I was pretty OCD-ish in trying to figure out if my counts might be coming back. I checked and rechecked my black and blue marks and my Petechiae, the pinpoint dots that are a sign of low platelets. Were those new marks or old ones? I looked at a red mark on my gum and wondered if it was blood or if I had food stuck in my teeth. I started to go after it with my toothbrush, but I made myself stop. All I need is to cut my gum and start bleeding.

I am not a professional, but I imagine that this type of checking is a way of trying to feel in control of a situation that is not in our control. Kind of like when you are waiting for an e-mail from that special someone who hasn’t written or called in days. You try to distract yourself, but you can’t stop from clicking on your e-mail. Click, click, click…you could drive yourself crazy.

In times of anxious waiting, I know all the “tricks.” Change your focus. Take care of the things you can control, and give the rest up. Put on comfortable clothes. Do some gentle yoga. Stretch. Read. Take a walk. Breathe. Listen to music. Call someone. Think healing thoughts. Those are just some of the things I do; I'm sure other people have other things.

Still, when your mind works a certain way, it’s hard. It takes practice, and a nudge from self when my mind wanders off. Maybe some of us could form a chapter of ruminators anonymous.

Friday, December 12, 2008

Transfusions and rashes and shakes, oh my!

Due to my low counts on Monday, I was anxious on my ride into Boston yesterday. Always on the lookout for signs, I was happy to hear a radio station playing the Grateful Dead singing, “I will get by…I will survive.” When that was over, I switched to another station, only to hear a deep male voice threatening, “Your time is running out!” Waaaaaaa. If you’re going to stay open to signs, you need to learn how to filter out the bad (and just plain silly) from the good. I listened to the rest of the message, which was about a last chance to contribute to a PBS fund drive. The man was NOT talking to me. I got a grip. In my head, I switched back to the Grateful Dead: “I will get by, I will get by, I will get by, I will survive.”

I survived the long day at the clinic, but it wasn’t easy. My white count was down to .9 (normal is 3.8-9.2) and my hematocrit was down to 21 (normal is 34.8-43.6). I wondered how I had been able to walk the dog nearly two miles the day before. I guess I was running on reserve power. I needed a platelet transfusion in addition to needing blood; I figured if my platelets were that low, I didn’t really need to know the number, because it would only spook me.

This being the third downward spiral after a combination of CMV and Valcyte, the drug used to treat it, they switched me from the Valcyte to a different drug, Valtrex, which looks like a horse pill and needs to be taken four times a day. They said this drug should hold down the CMV but not mess up my counts.

I managed to avoid a bone marrow biopsy; Melissa relayed Dr. Alyea’s conviction that all this craziness with the counts is a medication issue. (Sigh of relief here.)

On to the infusion room. I was pre-medicated with Tylenol and Benadryl to head off drug reactions, and M.J., my nurse in the infusion room, started the platelets first. Soon afterwards, I started breaking out in hives. M.J. added another 25 mg. of Benadryl. Then I started shaking, my teeth chattering like I was out in the freezing cold instead of being huddled under a blanket inside. They call this rigoring. Melissa came in and put in an order for IV Demerol. I remembered that Demerol had stopped the shaking when I got it in the hospital a few times when I was spiking a fever. Thankfully, the first 25 mg. of Demerol stopped the rigors yesterday.

When Diane came to rescue me (again) I told her about the shakes, which in my mind were more connected to fevers than to platelets. She reminded me that I had rigored after platelets countless times in the hospital.

Somehow I had blocked, or partially blocked, the memories of all those discussions about what could be done to prevent the platelet reaction or to best deal with it when it happened. I wondered about the source of this forgetfulness. Was it (a) chemo brain or encroaching dementia, (b) a matter of low blood flow to my brain (c) the two Benadryls or (d) the capability of the mind to place a haze over some of our worst memories?

Diane drove me to her house, where I fell asleep sitting up a couple of times until I got myself up to bed. While sitting on the edge of the bed, I watched our second cousin, Rabbi Rick Brody, try to win a $1 million Hanukkah prize on the show, “Are You Smarter Than a Fifth Grader?” Our cousin Betsy had e-mailed us a reminder to watch the show, which had been taped over the summer. Ricky, who lives in California, is 34, married and a father. To me he is still one of the younger kids around the holiday table.

I remember catching this silly show when it first came out, and thinking it was never going to make it. Shows you how smart I am.

Yale-educated rabbi (Rick) was followed by a priest (also Ivy League-educated); host Jeff Foxworthy called it “The rabbi vs. the reverend vs. the redneck.” Later, I found the details of Rick’s appearance on a blog, Game Show Kingdom, (who knew?) where, if you’re interested, you can scroll down quite a ways to read the questions and answers from last night's show. 

Rick got stumped on a question from fifth grade history: “In the 1850s, the U.S. bought 30,000 square miles of land as part of the Gadsen Purhcase. The land is now part of two U.S. states. Name them both.”

Rick did not get the right answer, which is Arizona and New Mexico.

Most of us probably wouldn’t know that answer, but, whatever. He still earned $25,000 and the chance to say into the camera, “I am NOT smarter than a fifth grader.”

While thinking about how strange this all was, I keeled over and fell asleep with my head at the bottom of the bed. I eventually straightened myself out, but I slept badly, annoyed by the sense that my skin was breaking out even more than it had during the transfusion. By morning, I had a full-blown, VERY ITCHY, rash.

I ended up returning to the clinic, where I saw Melissa, who conferred with Dr. Alyea. He said it was probably a continuing reaction to the platelets, and he prescribed a short course of steroids along with Atarax (hydroxyzine), which works like Benadryl only better.

Later I spoke on the phone with Tami, who sympathized. “It’s like you’re going two steps forward and not really two steps backwards, but more like two steps sideways,” she said. Well spoken, Tami. I think a lot of people know the feeling.

Sorry this post is so long. It’s been a long two days. I return to the clinic on Monday.

Wednesday, December 10, 2008

Did I mention that I'm keeping the dog?

Katie took this photo of Maddie watching her friend Simba
swim earlier this
fall. Below left, Ben shares the couch with the dog.

Good medicine is underfoot. It is also on my couch and frequently by my side.
It is the dog that I threatened to give up over the summer.

In August, I wrote a querulous post headlined, “Does Anyone Want a Dog?” It was about my frustration with at a year and a half. No matter how often we walked her, she frequently left us a “present” on her favorite spot in the kitchen, which had begun to smell like a kennel.

Finally I came up with a solution. I had kept her downstairs overnight, giving her the run of the dining room and kitchen, because I kind of liked the idea not sharing my bedroom with her. But I broke down and got her a new LLBean bed and put it in my room. At first she woke me up at crazy hours like 4 a.m., insisting on going out. I took her out and then left her downstairs and went back up for more much-needed rest. Eventually she slept to a more respectable hour, say around 6 or 6:30 a.m.
But even after going out, with nothing in her stomach, she sometimes still had an accident on the floor. I had one other idea: Let her sleep on the couch. She really likes the couch but we kept shooing her off. Except for when I had a lapdog as a child, I never let my big dogs on the couch. I decided I could make an exception for this medium-sized dog.

So I put one of my mother’s afghans in the dog’s favorite corner and let her hang out there when I went back upstairs. And that was the end of the messing on the floor. That side of the couch, meanwhile, has become the dog’s spot. I guess that means she’s spoiled, but she is well-behaved in most other ways. And I like sitting next to her while we watch TV or read. I can cuddle with her without having to get down on the floor. I can understand why they take dogs to hospitals and nursing homes for therapeutic purposes. There is something incredibly calming about petting and snuggling up with a dog, feeling its heart beating. I’m not a cat person, but I suppose cat-lovers find similar rewards in being close to their animals.

Now Maddie seems to prefer spending the whole night on the couch. She jumps right up there and curls up in her spot after our last walk of
the night. When I hear Katie getting ready for school in the morning, I stumble downstairs, walk the dog, then go back up for a couple of hours without really waking up. The downside with dogs, of course, is that you have to walk them in bad weather. I usually don’t really mind, because it gets me out. I will find out tomorrow where my hematocrit level is, but I figure it can’t be that bad because I just walked a couple of miles with her, fueled by a black and white cookie (OK, three cookies, but they were minis).

I thought of coming home after my first loop, because my legs felt a little heavy and I was getting a bit winded going up a hill. Yesterday I cut it short because I wasn’t feeling that great. But today, either out of stubbornness or to prove to myself that I’m OK or to give the dog her usual workout, I went twice around the lake.

When I came home, my head was pounding a little and I could feel my heart beating. (Should I admit this? Well I guess I just did). It felt good to touch my toes and let my head hang down. The dog came over and nuzzled me. Good dog.

Monday, December 8, 2008

Trying to stay up in a downturn

I expected my counts to be low at today’s visit, but I was unpleasantly surprised at how low they really were. After being great two weeks ago, all of my counts are below normal because of my third bout with CMV and because of the drug Valcyte, which is used to treat the virus but which also suppresses bone marrow production. For more details about the "stupid virus," see last week's post about it.

My platelets were 27, white blood count 1.4 and hematocrit 25.2. The transfusion from last week helped somewhat, but not too much. The CMV results take longer than the rest; after last week’s test, the virus was actually gone. When I get the results of today’s test, which may come in tomorrow, we will hope that it is still negative. If so, I can begin tapering the Valcyte. The question is whether anything can be done to stop this cycle from repeating itself. I am totally stopping my last immune suppressant, Prograf, which should help. We’ll see if they come up with anything else.

I need to return Thursday for blood work, a probable bone marrow biopsy and, if needed, transfusions. As soon as I got home today, I gave myself a shot of Neupogen to boost my white count. I’ll give myself another shot tomorrow and Wednesday.

I’m just about six months out, which is where I was when my counts crashed in April, signaling the graft failure which led to my third transplant (the second if you don’t count my autologous transplant in 2003). Naturally I am jittery about the same thing happening again. But my low counts correlate with the CMV and Valcyte, and Melissa said to try not to worry.

Today I also saw my wonderful social worker, Mary Lou Hackett. Of course without revealing their identity, she often mentions long-term survivors who’ve been there, done that. She has said that in the first year after transplant, many people experience ups and downs with their counts.

Like a little kid, I asked her today if she could tell me the story about the people whose counts go up and down. It’s reassuring to hear repeatedly that I’m not the only one it happens to.

I told her my worries about the six-month mark, and asked her what she thought about my concerns.

“What do you think?” she asked.

“Well,” I said, looking out the window at the busy Boston street. “If a bus hit me on the corner six months ago, it doesn’t mean that another bus will hit me in the same spot today or any other day.”

She smiled.

I smiled. I thought that was a pretty good answer. Now I just have to believe in it.

Friday, December 5, 2008

Getting out is hard to do

Some of the members of our tennis team gathered tonight for
dinner. Everyone always makes me stand in the middle!

When I wake up most mornings, my wardrobe choices are simple: the black sweatpants, the black yoga pants or the black running pants; the blue or the red sweatshirt; the clogs or the sneakers. The pants are really comfy, and the elastic waistband creates the illusion that no matter what I eat, I never gain an ounce. Putting on regular clothes requires exiting the comfort zone.

Tonight I was invited to attend our tennis team’s dinner meeting at our team member Lori’s house. This created a combination of anxiety and pleasant anticipaton. I wanted to go see everyone, but I hesitated. What if someone was sick? Since I cannot play, what if I felt left out when they discussed team business? What if I felt on display? And, it being the time when I usually watch the Friday night news programs, what would I do without (PBS' “Washington Week” moderator) Gwen Ifill?

Well, I figured, her panel of journalists wasn’t going to have too much exciting stuff to analyze this week anyway. The key topics would be: Is Commerce Secretary a consolation prize for (New Mexico Governor) Bill Richardson? And: Will the three automakers have any greater chance of getting a bailout now that they drove in their hybrids to Capitol Hill as opposed to flying on corporate jets? It’s not like we’re in the middle of the campaign, when I seriously might have had trouble tearing myself away.

I really did want to see my friends. It’s more a matter of the emotional and physical effort of driving half an hour at night and being with a group of people. I’m sure it’s the same for most everyone who’s been out of circulation due to illness; even if you’ve been in bed for a week with the flu, getting back out can be hard to do.

I decided to go. This meant putting on regular pants, a nice sweater, adding extra hair gel, finding the lip gloss, picking out jewelry and staring at myself for an extra minute in the mirror. SMILE! I said to myself. There. You look perfectly normal.

Our team has been together for years, and we’ve turned into a little family. I was glad to see them. They seemed genuinely happy to see me. I twirled around in Lori’s kitchen, hamming it up a bit. “Do I look normal?” I asked. “Do I look regular?”

I’m not even sure what I meant by that, but one of my friends who was in the kitchen at the time seemed to get the idea. “Are any of us really normal?” she asked.

Hmmmmm. Everyone has something. My something happens to have been a biggie, but it doesn’t make me that different.

I had a great time. Then I drove home, raced upstairs and put on my sweatpants.

Thursday, December 4, 2008

Medical web searches lead to 'cyberchondria'

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, December 2, 2008

Stupid virus

Last Monday I wrote that, due to impressive counts, I was “promoted” to every other week clinic visits instead of every week. I had a little separation anxiety, but it didn’t last long, since I was quickly “demoted” to every week.

That’s because once again I tested positive for CMV, a virus that often pops up after transplant when your immune system is weak. The virus can lower your counts, as can Valcyte, the drug given to fight the virus. I had already been through this in October, when I had to take Valcyte for so long that my counts were in the basement.

So I went into Boston yesterday for a 1 p.m. appointment to get my counts and the viral level checked, not really anticipating too much change since it was only a week after my previous visit.

My white count (3.1) and platelets (112) had only dropped a little, but my hematocrit was 23.8 (and hemoglobin 8.5), meaning it was transfusion time. A few days earlier I had huffed and puffed going up the stairs, making me wonder if my red count was dropping. But I’ve been walking without any fatigue, although I did feel exhausted after Thanksgiving dinner.

In any case, due to a backlog of patient visits after the missed day of appointments on Thanksgiving, the blood wouldn’t be ready until about 7 p.m. This meant arranging to stay with Diane in nearby Newton and making sure that, back home, Katie and the dog had a place to stay. Everything quickly fell into place, thanks to my wonderful support network.

The whole afternoon was ahead of me, and although I had a book, I couldn’t see spending any more time in the waiting room. I had envisioned a quick clinic visit followed by a short (masked) trip to the Chestnut Hill Mall to return a shirt. I figured I might as well go to the mall while I waited for my blood. On the way to the mall I got a coffee and a scone (I was pretty tired but not too tired to proceed), and, when I arrived at the mall with some coffee still left, I didn’t want to waste it.

So I put on my mask and took the coffee cup into the mall, pausing now and then to take a quick sip underneath the mask. Still wearing my white patient ID bracelet, I went into JJill to make the exchange and try on something else. I had to wonder how I looked: A masked woman with a hospital ID bracelet, holding a shopping bag and maneuvering a coffee cup.

After a quick stop at Diane’s to charge my cell phone, I went back to the clinic for the transfusion, starting a little before 7. Diane’s husband, David, dropped her off at the clinic around 9, and she drove me back to her house for tea and cookies and a good night’s sleep.

I’ll be back at the clinic next Monday. Woohoo.

Saturday, November 29, 2008

Talking Turkey Race makes me want to run

I took this photo at Holyoke's Ashley Reservoir with my
cell phone while walking there with a friend a few weeks
ago. Today, runners will pack the trail.

Holyoke's 30th annual Talking Turkey 6-Mile Cross Country Race, taking place today, is expected to draw close to 1,300 runners.

I won't be there, but I will be thinking about it.

That race, which circles the beautiful Ashley Reservoir, is a must-do for many area runners, along with March's St. Patrick's Road Race, also in Holyoke.

I've run the Talking Turkey many times. It has a special resonance for me: When I ran it in 2005, it marked my comeback to racing after my chemotherapy and stem cell transplant in 2003. I wrote about the events leading to the race, and about what it meant for me, in a piece for the New York Times magazine's Lives page.

I was just talking to my friend Emily about it. She said, "Next year, right?"

That's my goal, along with one day getting back to the St. Pat's race, a hilly 10-k.

Whatever you're trying to come back to, you figure out different ways to build back up. (I admire you Pilates people. Ouch. I couldn't do it.) Tennis came back easily this past summer and fall, probably because, unlike running, it allows for frequent stopping to catch your breath, and in doubles, it has the built-in capacity for shouting "Yours!"

When coming back to running after each of my three Caesareans and my first round against leukemia, I tried two approaches. First, of course, I walked, slowly, and then aerobically, until I got to the point where I thought I could jog.

After the babies were born, I just went straight at it and ran the half-mile or mile (I can't remember exactly which). After leukemia, I took the walk/run route; quarter-mile walk, quarter-mile run, for about a mile until I could do one mile at a time. The rest followed naturally, as I built back up to my usual level of six miles or so on weekends and shorter distances during the week, mixed in with tennis, yoga, weights, biking, and, oh yes, did I mention my full-time job?

With my hematocrit currently about 28 (normal is 34.8-43.6) I actually feel fine, but I obviously don't have it in me to do more than a fast walk with maybe a few minutes or so of jogging between trees. So, I guess I need to be patient. It's not always easy, but of course we all need to remember to be thankful for what we can do rather than spending too much time fretting over what we can't do.

I wonder what approach others have taken to getting back to running or whatever activity that makes them feel like themselves.

Runners at the Talking Turkey Race usually get a really nice long-sleeved mock turtleneck. The last year I ran it, in 2006, they gave something a little different: a maroon fleece vest that I wear all the time. This year, for the 30th anniversary, they're giving out something super-special: a windbreaker. Sigh. I'd really have liked one of those. Sure, you can buy your own windbreaker, but it's not the same as earning it at a race. And as most runners know from an unwritten code, you can't wear the T-shirt or windbreaker or vest or whatever unless you finish the race. Not that I need any more T-shirts, but I do need to at least have a plan about how to get back to running.

Wednesday, November 26, 2008

Remembering. Wondering. Thankful.

My mother, Lynne, arranging flowers from my garden four years ago.

Two years ago today, my mother died after a short battle with lung cancer.

Tomorrow, of course, is Thanksgiving.

On Thanksgiving two years ago, I was consumed by grief and by guilt, while also being buoyed by all of the love around me, from my children, family and friends.

Quintessential New Yorkers, my parents always came to our house for Thanksgiving; they loved the mood of the holiday in New England. My mother, with help from the kids, set the table, turning it into a work of art. Distrustful of Western Massachusetts florists, my mother brought a centerpiece from New York.

My mother loved getting dressed up to go out to dinner with my father, Alfred. She also loved wearing sweaters and slacks for Thanksgiving in the country, always with flair.

After that became cumbersome, we ordered the centerpiece from the local florist. When it arrived, my mother sighed, shook her head, took it apart and redid it with her usual flair. She cleaned the silver and ironed the tablecloth, despite my protestations that she needn’t bother. Cleaning up loose stems and leftover silver polish, I got a little annoyed, and then guilty about feeling annoyed. I was glad that she was there, and I had no idea how I'd do it without her.

I could be annoying too. I insisted on going for my traditional Thanksgiving Day run before putting the turkey in. We ate late, so when I got back from my run I felt that I had all the time in the world to stretch and lollygag. Inevitably, my mother would say, “We better put that bird in.”
Yes, Mom, if you say so.

The last-minute preparations were usually chaotic, but eventually we sat down to the feast. My father gave a short speech about being thankful to be in America, the best country in the world despite its problems.

My mother came alone for four years after my father died in 2002. But two years ago, she couldn’t get out of her bed. For most of that fall, Diane and I had taken turns going to New York to be with mom, first in the hospital and then at home under hospice care and with full-time aides. The once-lovely apartment building where we grew up was in shambles, having been caught in the wave of classy co-op developments in New York.

In top photo, Diane, left, and I stand in front of the apartment building where we grew up.
In bottom photo, me, Mom and Diane leave the building for some sort of ladies' outing in 1964.

Working around the mostly elderly rent-controlled and rent-stabilized tenants who could not be made to leave, the developers tore out walls and replaced old pipes, making a big mess and not cleaning up after themselves. Big fat rats scurried up and down the back staircase. There was debris everywhere. And did I say there was no heat? It was illegal, but they chose to pay the fine rather than to spend the time and money to work faster to get the heat going. They did give the tenants space heaters, certainly not enough to heat a whole apartment. My mother spent much of a month curled up under heavy quilts; the one time she did try to get up, it was so cold she just wanted to go back to bed.

I last saw my mother two days before Thanksgiving. I told her I would bring the kids down for the holiday, and we could eat on stack tables in her room. She begged me not to. She wanted to picture me in my own house, not hanging around her bed. I stayed home, planning to turn around and go back down on Monday. She died on Sunday. I cried my heart out, wishing I had gone. But my cousin Joanne and others told me I had given her the gift of letting her be the parent. She had asked me to stay home, and I did what she asked.

I was so attached to both of my parents that I often wondered if I could survive without them. I thought that somehow, when they died, the earth would open up and swallow me. They both lived into their 80s, lived good lives and were sick only for a short time. What more could you ask? No matter how old they are, you want more.

Before my father died, I remember asking a childhood friend how she coped with her father’s death. “You don’t get over it,” she said. “But you get used to it.”

I got used to it. My sister and I leaned on our mother, on each other, on our children and on a whole lot of loved ones. I ran a half marathon. I played good tennis. I did yoga. I drank a lot of water, took care of myself, got plenty of rest. I spent extra time with my mother.

I didn’t get swallowed up by the earth.

I did get cancer. After each parent’s death.

My initial leukemia diagnosis came just about a year after my father’s death.
I relapsed less than a year after my mother died.

With the relapse, was it something I had breathed in from the construction? I doubt you could make a direct connection.

Was it grief, which, both times, created a vulnerability causing cancer to pounce?

The straight scientific answer is that, no, loss of a parent cannot cause cancer.

Still. I am left wondering if there was a relationship. But what happened happened, and now I must focus on the present.

Tomorrow, Joe will put the extra board in the table and help put the tablecloth on evenly. Katie will set the table the way my mother taught her. We’ll take out the turkey that Katie made years ago out of a tiny upside down flowerpot for the body, construction-paper feathers and pipe-cleaner legs. I’ll clean the silver (sigh) and try my best to make a decent flower arrangement, hoping my mother’s hands will guide me. We’ll prepare a small feast. A few friends will come. Ben will deliver what his annual “Al Gordon speech,” in my father’s place.

We will be thankful. We will try to think of my parents’ presence, not of their absence.

Monday, November 24, 2008

Good news Monday

When possible, it's nice to plan something special for yourself in conjunction with a visit to your doctor's office or to the clinic. This doesn't have to be something big. It can just be some little treat.

Sometimes I see a friend in Boston or stop by Diane's. Occasionally, we go shopping. Again, I'm not talking about buying something big, although I did buy a necklace at my favorite shop in Newton Highlands on a brief (masked) shopping trip with Diane.

Yesterday's visit had a built-in treat. My friend Mieke, who moved to Chicago at the end of the summer, is in Western Massachusetts for a week, and she went with me to Boston. Mieke is a relatively new friend; we met at the newspaper where she was a photographer and where I, athough on leave, am still on staff. We hit it off immediately when going on assignment together and soon became good friends.

Yesterday, we talked and laughed the whole way into Boston, fueled by a muffin each and a Starbucks to go (ouch, I sound like an ad again, sorry), and before I knew it we were there. I was so relaxed that I even forgot to get nervous at my usual spot when approaching Dana-Farber. We talked in the waiting room, and I forgot to worry about my blood counts. And when the counts were good, I was happy to share the news with my friend:
White: 4.9 (normal, yay!)
Platelets: 164 (normal, yay!)
Hematocrit (28.4) and hemoglobin 9.9...down a bit and kind of pokey.

Dr. Alyea reassured me that he wasn't worried about the red count, which often takes the longest to recover. He also told me that I could go every two weeks instead of every week.

I had already graduated once to the two-week plan, but my visits were increased to weekly when my counts went down earlier this fall. It makes me a little nervous to go back to two weeks. I don't actually love spending the whole day going to the clinic, but I do like the security of getting checked once a week.

Oh well, with Mieke to talk to all the way back, I didn't have time to dwell on it.

In another encouraging sign about the success of new therapies in the war against cancer, the Cambridge, Mass.-based biotechnology company Genzyme said yesterday that it has asked the FDA to approve its drug Clolar (clofarabine) for treatment of acute myeloid leukemia (AML) in previously untreated adults 60 and over whose leukemia may be resistant to standard chemotherapy.

The drug is currently approved for treatment of acute lymphoblastic leukemia (ALL) in relapsed patients one to 21 years old who have received at least two prior treatments.

Saturday, November 22, 2008

Saturday funnies

Things fall apart, sometimes all at once, sometimes randomly.

The door to our microwave broke. Craig, the cheerful appliance repairman, rigged it up so that it works, but you have to use two hands to open the broken latch. I can’t replace the microwave only, because it is in the same unit as the oven. It would be difficult, and costly, to replace the whole unit, so we make do. I did manage to grow up without a microwave, but at this point it seems like a must-have. I use it a lot…to reheat my coffee.

I call Craig so often that he finally gave me his cell phone number so he’d be easier to track down. He seems to get a kick out of appliances. He understands them, forgiving their finnicky behavior. When he is done fixing something, he says, “She’s good to go. She shouldn’t give you any more trouble.”

More than once, he’s dealt with my stove. The electric ignitors on the burners need to be filed occasionally, and if you don’t get it just right, one or another burner won’t go on and it will click like crazy when the others are lit. I yell at it. I pound the stove. I try my nail file on it. Finally I call Craig. He cleans them up and they’re good to go. Finally it occurred to me to ask him to leave me a piece of his magic sandpaper.

Our kitchen cabinets (yes, I know, these are not appliances) have, over the years, fallen apart one at a time with no provocation. Turns out that when we redid the kitchen 16 years ago, they used a bad batch of glue. The kitchen supply people sent a carpenter to try to figure out which ones to re-glue, without much success. At least when I call to report another broken door, they fix it free of charge.

But back to appliances. The other day my dishwasher broke, and Craig came to fix it. As he was about to leave, I remembered something. Sometimes, odd horseshoe-shaped pieces of thin wire turn up in my washing machine. I’ve been saving them to show him, figuring that they signal my washing machine’s slow deterioration. But also figuring that “if it ain’t broke, don’t fix it,” I have forgotten to ask him about it.

“Oh,” Craig said, with a grin.

Then I thought I heard him say, “Those are brunderwires.”

Huh? Was that some esoteric appliance part?

“Bra underwires,” he said. “I see it all the time. One customer really wrecked her washing machine with them.”

Ohhhhhhhh. What do you know about that?

Sometimes you just have to laugh.

Thursday, November 20, 2008

Time to put the tennis stuff away...sigh

Donna and Deb. R, standing, and me and Deb D., kneeling, on the court
in Longmeadow, Mass., earlier this month.

When you're on the disabled list, it helps to try doing at least a little bit of what you enjoyed before you were sidelined. Some things come easier than others. When I was zonked out from medication, I felt at least a little bit like myself by reading a book, even if I dozed in and out. If you like board games (which I don't), or if you like watching movies (which I do), you can modify those activities to fit your energy level and concentration.

It's a little harder if it's a sport like tennis that you love.

Sometimes in the hospital I practiced my swing (sans racquet), just to help my arm remember the movement. Back home after my transplant in June, I swung the real racquet and sometimes bounced a ball on it. But it wasn't like doing the real thing. When I took my first walks around the lake and passed the Mount Holyoke tennis courts, I was motivated by hearing that lovely sound of balls hitting the soft spot. Sometimes, though, I took another route because I was just so upset that I wasn't able play yet.

Soon enough, I was out there trying for my umpteenth comeback. I was lucky that the weather held for a long time. We took the photo above just a few weeks ago. I managed to play outside into the beginning of November. Now, with temperatures below freezing, I have finally put my stuff away for the season.

Everyone has moved inside, but I can't follow because I still don't go into public places without a mask. One of my teammates asked if I thought I could try playing a match while wearing a mask, but the answer is a clear no. Sometimes while I am waiting in the clinic, my face heats up inside my mask so much that I begin to feel feverish. I couldn't imagine running around that way.

I was lucky enough to have friends who put up with me while I regained my tennis legs (and swing) in the summer and who played outside so late in the season that some of us even wore gloves. I am lucky that it was (and is) always more than a tennis game, with time for sharing stories, making jokes and having bagels or a cold drink or a popsicle after.

I was lucky that our coach, George, below left, hit with me once a week, imparting his wisdom about spins and slices and, oh my, forehand and even backhand loops.

My friends Joe and Chip put up with me when I first got out there; I hit a lot into the net and only tried for balls that were hit right to me. My friend Ken played singles with me and even told me where to stand after he served. He told me that I won fair and square, but how many matches do you get to play where your friend makes sure you hit a winner back?

Besides the friends in the photo, other members of our tennis family -- Korby, Nancy, Jeanne and Gail -- played doubles with me outside all summer and well into the fall. They didn't patronize me, but they did make sure that I stopped when I was tired.

It felt great to sling my tennis bag over my shoulder, grab my water and sunglasses and feel like my old self, and to focus on hitting the ball to the exclusion of everything else.

I guess that soon enough I'll be able to go inside or, when it gets warmer, play outside again. In the meantime, maybe I'll think about trying to go for a little run...unless I can convince them to play in the snow, but somehow I don't think so, even though there is a lot of love going around with that yellow ball.

Tuesday, November 18, 2008

Good counts, interesting conversation yesterday

My counts were good at yesterday's clinic visit.

White count was up to 3.3 (almost normal!)

Platelets were 163. Normal, yay! (I stopped lifting my little weights when my platelets plunged, but now I no longer have an excuse.)

My hematocrit dropped a little, to 28.3, and hemoglobin dropped to 10. I was surprised, because my energy has been fine. In any case, I earned a shot of Aranesp to give my red cells a boost.

People were talkative yesterday in the clinic. Interestingly, I met two women who were lucky to have sisters who were excellent bone marrow matches. One had received her sister's marrow nearly four years ago and was doing wonderfully. She sat in the waiting room, smiling and lightly holding her husband's hand and looking not the least bit nervous to be there. In fact, she looked quite happy. We briefly exchanged stories. I remember that I had the same kind of confidence when I was nearly four years out. I was a little envious, but also happy to see a survivor who was doing so well.

Later I talked to a woman who had recently finished chemo and was about to be admitted to get her transplant. Her sister, who was with her, would be her donor. Two similar faces looked at me, the difference being that one had hair and the other wore a headscarf. They had had a long day of pre-admission testing. 

They asked about me. "I had a transplant in June," I said.

They looked at me for a minute.

"Why do you have so much hair?" one of the sisters asked.

Well, then, there's the rest of the story...

You could really get me going on the hair topic: "Yeah, I know, I have a lot of hair, and it's still so curly. I can't wait until it calms down. Some of my friends think I should cut it all off to where it was about an inch long. They thought it looked really cool. But it reminded me too much of post-cancer hair. So I'm trying to let it grow, but it keeps pouffing out so much that sometimes it drives me crazy. I think I should at least wait until seven months out, when my doctor said I could color it. I asked my son Joe the other day, and he said 'Stay the course.'"
Bla bla bla. 

Anyway I didn't say any of this. I figure my friends and family have had to listen to it enough, although in a second it might have poured out of me and I might even have asked these strangers for their advice.

Instead, I answered that I had had a transplant in October (not to mention the auto five years ago), but the graft failed so they redid it and now I was doing well and it sounded like she would be too.

It interesting how we do these little dances with strangers. I know how sensitive I am, and so I don't like to mention my "episodes" when asked by someone just embarking on a similar treatment. Of course I also know that everyone is different. But we pick up little bits and pieces of other peoples' stories and end up relating to them in one way or another.

I gave the sisters a big smile to show them that I was now doing fine (knock wood), and we all wished each other well.

Sunday, November 16, 2008

Leukemia threatens another life ... on film

Catherine Deneuve plays a woman with leukemia in a new movie

Tonight I heard an interview on NPR with Catherine Deneuve, known as the grande dame of French cinema and considered by many to be one of the most beautiful women in the world. I've followed her career since being transfixed by her performance in 1967's "Belle de Jour."

Now 65 and still beautiful, she plays the "monstrously complex" matriarch of a large, dysfunctional family in the new French movie, "A Christmas Tale." Her character has a rare form of leukemia, which killed her young son and now threatens her own life. It turns out that her black-sheep son is a perfect match for being a bone marrow donor. He says he doesn't love his mother. She says that's fine, because she doesn't love him. Obviously their relationship is complex and they love each other in their own ways.

In the interview, Deneuve discusses the complex relationships in the film and answers a question about how it has been for her to age on film in front of so many people. She replies that it is much easier for women to age gracefully in Europe than in the U.S. It's not a new thought, but still, it's interesting to hear it from her.

As for the film, I don't know how the story plays out, because the NPR story and print interviews don't give it away.

I do know that fatal blood cancers -- most often leukemia -  are "popular" in movies (and novels), including "Sisterhood of the Traveling Pants," "Terms of Endearment," "Love Story," "Dying Young," "Rainmaker" and a long list of others. I'm not sure why this is. Because leukemia and lymphoma sound mysterious, or romantic? Or maybe because they are a way of giving a character cancer without having to say the "C" word? (Although in the movie Deneuve's character presents herself by saying, "I'm the one with cancer.")

One google search for leukemia and movies turned up 48 entries!

I wonder if people have any thoughts about this.

Saturday, November 15, 2008

Another adventure with an "old" friend

On Friday I wrote about a trip with old friends to a lake house in Connecticut. About a week after that outing, I went on another mini-adventure with Margaret, another old friend.

My postings were delayed because I couldn't figure out how to put more than one photo on a page. Thanks Susan for walking me through it over the phone from California. I was beginning to feel really photo-phobic.

Margaret and I have been friends since meeting as cub reporters at our first job at the old Holyoke Transcript-Telegram. Although we now live across the state from each other, we've managed to stay super-close and see each other frequently. We've been through a lot together.

Since she lives in the Boston area, she and Diane were my bedrocks during my post-relapse hospitalizations. They stood "in loco Lynne," i.e. in place of my late mother, Lynne, who was with me all the time during my first bout. Margaret was the one who was with me in the clinic the day I learned I had relapsed. These days, she often meets me downtown before or after a clinic visit to share good news and shore me up when my counts, and my mood, are down.

It was fun to go on an outing unrelated to health issues. We drove about 45 minutes west of my house to the town of Middlefield, revisiting a waterfall we had marveled at together many years ago. We went to Glendale Falls, which is one of the longest and most powerful waterfalls in the state. Katie and Margaret's son Natty came along. (In the photo, I'm the one on the left with the pouffy hair.)

When we got there, we all started walking down the steep path that leads through the woods to a beautiful pool at the bottom of the waterfall. I didn't go very far, suddenly getting suspicious about the possibility of the fungus aspergillus lurking in the moist soil. People with compromised immune systems are susceptible to infection, as I learned the hard way four years ago when I developed a fungal pneumonia, possibly picked up in my garden, and had to have lung surgery to remove it.

Margaret and Natty scampered down to the bottom while Katie and I retreated to a warm rock where we laid out our picnic. Soon Margaret and Natty joined us, and we enjoyed our food and their friendship, the sound of the waterfall roaring not far away.

Friday, November 14, 2008

It's good to get out of the neighborhood

Me, Tami and Nancy at Candlewood Lake last month

Recently I have ventured a little farther from the neighborhood. Not counting my visits to Dana-Farber, I hardly ever go further than a 30-mile radius from my house. I still haven't gone far, but you really get the feeling that you're breaking out even when you're just taking a little trip.

A few weeks ago, I went to New Milford, Conn., for an overnight at the lake house where my friend Tami and her family have been going since I've known her, which dates back to high school. When planning and packing up, I had the great feeling of being a "normal" person packing a bag for somewhere other than the hospital. Emily, another member of our sisterhood, had to stay home in Pittsburgh and work. We talked to her on speaker-phone, so it was almost like she was there.

And by coincidence, Ben was covering a Rutgers football game in Pittsburgh, so he stayed with his "Auntie Em,"
who took him to the movies.

My worries, and my hand sanitizer, went with me. We took a long walk and as we were going up a steep hill, I asked Tami, "Do you feel winded?" (Translation: Am I OK?) Yes, she said.
She added that she feels winded every time she walks up that hill. It's not that I expect to have the same endurance as other people, but rather that I expect to have similar or better endurance to what I had the day or two before. If I feel that I'm more tired than usual, I begin to wonder if I am getting sick in a little or big way.

Of course, no matter how refreshing the change of scene, most everyone takes their regular concerns with them, so in that respect, I was just as normal as anyone else.

We don't see each other that often, but we pick up without missing a beat. I guess that's what happens when you've been friends for 40 years. One day it poured, so we sat inside and talked and ate and ate and talked. The next day it was beautiful, and we walked down the road for a long time. We said hi to two horses in a field who came over to the stone wall to see us.
The horses walked along next to us on their side of the wall. I wanted them to stop so I could take their picture, but they kept moving.
So I jogged ahead to take their photo from a better angle.
"Hey," I said to my friends. "Look at me. I'm jogging!"

Thursday, November 13, 2008

Stimulating the economy, Part Two

A couple of posts ago I wrote about buying a new couch.
I also just bought a new car.

In the absence of any paycheck other than social security disability, it might seem strange to make such big purchases. But here's the thing: I hold on to my stuff for a long time and then I think about getting new stuff for a long time, so that by the time I actually make a big purchase, I have saved a lot of money during the thinking phase. Also, as my sister, Diane, pointed out in her recent comment, so-called "retail therapy" is an investment in the future. It is a sign that I plan to be alive to enjoy my new purchases.

Back to the car. It was hard to say good-bye to the nine-year-old Mommy Van with the Wellfleet and Eastham parking stickers in the window.

But last winter, when it got stuck in a snow ditch, I began to think seriously about getting something better in the snow. And with 162,000 miles on it, I figured I should quit while I was ahead.

It’s hard to go car shopping at the post-transplant stage when you still need to wear a mask inside. In fact, it's hard to do most kinds of shopping, as I wrote in my "couch" post. Earlier in the fall, when I bought a mattress sight-unseen, I had to explain to the salesman that the delivery people couldn’t come if they were sick. I could have left it at that, but the rest of the story just slipped out. “I had a bone marrow transplant and I have a weak immune system and I can’t be around germs,” I said.

He promised to send healthy delivery people only. We settled on a memory foam mattress.
“It’s really great on your bones,” he said.

Hmmmm. Well I guess I had never thought much about the meaning of a bone marrow transplant before I had one. I ended up hating the mattress, because I felt every night that I was getting stuck in the valley formed by my body. Recently I exchanged it for a normal mattress. But anyway.

As for the car, I settled on a Subaru Forester. I drove the car, figuring that there couldn’t be too many germs in a new car. Then I negotiated with salesmen from different dealerships. I told them only that I had recently gotten out of the hospital and wasn’t supposed to be around germs, and that we would need to have our preliminary conversations outside.

I’m not naturally suited to the price negotiating thing, so I tried extra hard to do a good job. I researched the car on Consumer Reports and paid $14 for a report telling me the price at which to start negotiating.

Dealer #1 was about $500 above that bottom line and said he could only go down $100. “You don’t have to believe me, but I’m only making $250 on that car. It’s a great deal,” he said. As for my van, valued at $2,800 in the Kelley Blue book, he said he’d give me $2,000. Harumph.

Dealer #2 went below the Consumer Reports bottom line on the car and gave me $3,500 for the van, for a total price of $2,000 less than Dealer #1.

Naturally, I bought the car from Dealer #2, who brought paperwork into the van and used the dashboard as his desk. I had told him that I could go inside if I wore a mask, but he said he didn’t mind sitting in the van. (And, really, he would have sat on top of the car to make the sale, right?)

We chatted a bit, and he told me he is from Greenfield (Mass.), where my aunt and uncle lived and my cousins grew up. I asked him if he knew my late uncle Milton. “Milt!” he said. “Everyone knew Milt!” And it’s true; every time I bump into someone from Greenfield, they have a story about Milt.

So there I was signing paperwork in the car and talking about Uncle Milt. Odd. Then the salesman asked to take a copy of my license. I was on a break from chemo when they took the license photo, and the registry wouldn’t let me use the old photo. So in the photo I’m wearing a headscarf and looking kind of thin and pale.

When I handed over my license, I blanched, as though I had been found out. (I know, I know, nothing to be ashamed of, but still…) “It really is me,” I said.

I told him I’d miss the van, and the stickers, and he said that if I wanted, he could get the stickers off and affix them to the new vehicle. “That’s kind of cheating,” I said. “I’ll have to get back to the Cape and get some new ones.”

Mission accomplished, I went home for a few last days with the van. The van is dark green, and for a change of pace, I picked a maroon car with a reddish hue. It's a more fun, lively, jazzy color.

Last time I was in the hospital, my friend Barry brought me a red toy car. It was his way of reminding me about the need to “keep the car on the road” when my mind starts to wander to the dark side.

The little red car is on my dresser. The big reddish car is in my driveway.

And really, it’s all about keeping the car on the road, isn’t it?

Monday, November 10, 2008

A day on the sunny side of the street

While I was waiting in the clinic today I read a New York Times story that deserves the over-used word "heartwarming." It is about the extraordinary friendship between a Dallas man with an aggressive form of leukemia and a German man who donated his bone marrow to the Texan. The transplant was eight years ago and the man is cancer-free, but that is just the beginning of the story.

It was a fortuitous time to come across the story. It took the edge off the anxiety that I feel, and that I'm sure most people feel, when waiting for their test results.

My counts were all up today. Platelets were 154 -- almost normal! (Normal is 155-410). Sure is an improvement over my recent low of 39 on Oct. 14. Hematocrit was 30 (normal is 34.8-43.6), and my white count was up to 2.1. That's still low (normal is 3.8-9.2), but it's going in the right direction.

When I saw Dr. Alyea, he said that the lab was backed up and that my counts weren't back yet. He said I could go home and Melissa would call me in the morning, or I could wait around a little longer if I wanted. "I feel like I went to the grocery store and I'm leaving with an empty cart," I said. "I think I'll wait." Dr. Alyea laughed and said he thought that was a fine idea.

I felt like I had expended enough nervous energy and didn't want to carry it home with me. I was glad I waited.

Earlier in the car, on the drive to Boston, I listened to a CD of sanskrit yoga chants that my friend and yoga teacher, Erin, had made for me. It's really not the kind of thing to listen to while driving. But I felt it could help keep me calm, sort of like when I listened to a meditation CD a while back while making the same trip. Also, I have to confess, I have trouble sitting quietly listening to these CDs while at home, so I take advantage of the opportunity of previewing them while driving.

I was "Om-ing" along with the narrator, Richard Freeman, when I started to get a little sleepy. Last time I had balanced the meditation CD with a cup of coffee, but this time I didn't have my coffee with me. I found a couple of miniature Tootsie rolls floating at the bottom of my bag, but it was 11 a.m. -- too early for candy.

I turned the CD off and turned on the radio, looking for something lively.

I found a jazz station playing guitarist Mimi Fox's rendition of "On the Sunny Side of the Street,"
from her CD "She's the Woman."

The sunny side of the street seemed like a great place to be.

Saturday, November 8, 2008

Who is that woman behind the mask?

Today I looked at couches. My couch is really old; I still have the beige Danish Design sofa that many of my friends and I got for our first apartments. The couch and matching chair followed me to my house and have held up pretty well. They are so out-of-date that they are almost “in.” And I have disguised their shabbiness with colorful throw pillows.

But since I was holed up here last winter and will be holed up here again, I figured I might stimulate the economy and make the living room a more comfortable place in which to curl up and read a book. The current couch and chair are really low to the ground and not that comfortable. The den, where the TV is, has gotten more attention over the years. The living room has been neglected.

Naturally, I wore my mask when going into the furniture store today. After I chose a model and fabric that I liked, the saleswoman told me that I could pay about $100 more for a protective chemical spray making it easier to wipe up spills.

“It’s hypo-allergenic, but since you’re chemically sensitive, you might not want to do it,” she said, looking at my mask.

It took me a moment to realize that she thought I wore the mask due to chemical sensitivity, not due to the need to protect myself from germs post-transplant.

For some reason this pleased me. To me, the mask is a connection to cancer; to her, it was not. She did not think of me as “cancer patient," or even as "cancer survivor."

When I reached into my wallet to get my credit card to make a deposit (OK, I didn’t just look at couches, I actually bought a couch), my blue Dana-Farber ID card was visible. Of course I didn't try to hide it, but I wondered if she had seen it and would then start making assumptions or asking questions. I've been a loyal customer for years; she knew about my first run-in with leukemia years ago, but I don't think she knew about the relapse, and I didn't feel like going through the whole explanation.

This all made me think about my perception of who I am at this time in my life. I bet everyone going through cancer treatment, or recently out of it, has similar thoughts. Taking this one step further, I’m sure that perception by others is something dealt with by anyone who looks different, whether they’re in a wheelchair or walking with a cane or in any other way look different.

I need to realize that signs of difference are nothing to be ashamed of. I did correct the saleswoman and tell her that the mask was not due to chemical sensitivity, but rather because I need to avoid germs, and therefore the upholstery spray would probably be OK. She didn’t ask any more. Possibly I was anticipating the need to explain about the germs, which could lead to more questions about the long story, but the saleswoman did not probe. She didn’t care; she was selling me a couch, and she didn't need my life story to do it.

And of course I need to remind myself of the positives: I can go into a store, I can afford to buy a couch, I am on track in my recovery. I guess it's the same for everyone; we need to look at what we can do rather than dwelling on our limitations.

Easier said than done.

Meanwhile, I look forward to the day when I can go into a store without hiding behind a mask.