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.