Saturday, September 29, 2007

A Quiet But Glorious Day

I had planned to regale you with all the messy details of yesterday's platelet infusion gone bad. But I woke up this morning (always a good sign in my book), feeling grrrreat. It was a beautiful Fall day, and all I wanted to do was make myself a steaming cup of Costa Rican coffee and read my book while everyone else was still quietly asleep. Ah, my first Saturday morning of freedom.

So I decided to scuttle the negative and dwell on the positive. Hmn, methinks the cord blood is perhaps making me a wee bit sappy. I'll happily tell you the platelet horror story in person some day, if you really want to hear it, or you can check with my friend Patty S. who witnessed the ordeal. Best give her a few days to process the nightmare, though.

Great news! I think I'm getting used to sitting around on my butt all day reading and eating bon bons. It's a lovely way to pass the time. Most importantly, today I've felt really good all day, almost normal. In a few minutes, Marty and I will go for a walk with the pups. Marty will make dinner. Marty will clean up after dinner. Marty will offer to bring me more bon bons, perhaps some herbal tea, dear?

No, not a bad day at all.

Friday, September 28, 2007

Wimpy Woman

Imagine that you feel pinned to the bed, a body-sized steel plate pressing down on you. Or that all your bodily fluids have been replaced with one of nature's heavier elements, one you never heard of, substantially heavier than lead. You can't do a thing, and you don't care. You just take up space and wonder how long the ghastly feeling will last.

This is how sheer exhaustion feels, how I felt most of Thursday. Fortunately, I began to feel better by late afternoon. But I am now forced to admit that wonder woman is dead, or at best, packed in mothballs. In her place is wimpy woman, a wan creature who cares little for perfection, feels close kinship with slugs and sloths, and who is learning that doing nothing can be a good thing.

I wanted to tell you about the bad reaction I had today to a platelet infusion, but I can't. My battery is just about out of juice.

More tomorrow ...

Wednesday, September 26, 2007

Home Sweet Home

I was discharged on Monday. Here's how I did it.

Beginning last Friday, I started making suggestions to hospital staff that I thought Monday would be an acceptable day to release me. My ulterior motive was that I wanted to be home to see the East Greenwich Cross Country team (and my darling sons) make history by defeating Hendricken High School, a team that hasn't lost a meet since 1978.

By Monday morning, the nursing staff was confident I'd be discharged. The doctors, however, who hadn't been around all weekend, were less convinced that this would actually happen. When they moved into my room en masse, I was projecting utmost confidence and, I hoped, a picture of health. They asked me a few questions, and appeared satisfied I could go, as long as Dr. Antin (my primary doc) approved. He did.

The discharge took forever, and I feared we wouldn't make it to the meet in time. But we did. I'd just had a cord blood transplant, but witnessing the E.G. boys make history seemed the bigger accomplishment.

I'm delighted to be home, sleeping in my own bed, eating tasty food, interacting with my family. My dear friend Dianne is here helping out, doing her best to keep me from doing too much. Sad to say, this sometimes involves tying me to a chair, forcing me to nap at gunpoint, and removing sharp knives from my grasp, an extremely unsafe maneuver.

I hope to post here a few times per week to let you know how the business of growing an immune system from scratch goes. Ain't going to be easy.

Sunday, September 23, 2007

Let Me Outta Here!

In each of my extended hospital stays, I reach the point where I suddenly feel as though I can't take another minute being locked up. Ladies and gentlemen, I've reached that point.

The thing is, I know I'll be discharged pretty soon because my counts continue to rise. Before I was admitted, the nurse told me that after 2 days with an ANC over 500, I'd be set free. Well, I've had my two days over 500 and now I'm ready to leave. Did you hear that: I'M READY TO LEAVE.

What's the rush, you might say? Tomorrow, the next day, the next; you know you're getting out sooner or later.

Naturally, I want sooner. I want tomorrow. I want this minute.

I just can't deal with the rules anymore. Case in point. I've been eating less and less because the food doesn't even deserve to be called food. So,I asked Marty to sneak in a bagel for me. It was immediately confiscated. I can only have the bagels they bake here, and you can just imagine how little they resemble bagels.

Okay, whining's over. I'm planning my escape for tomorrow. I might be using in-house bagels to knock the nurses out.

Saturday, September 22, 2007

Star Patient or Just Staying Alive?

Okay, so I engrafted more quickly than they predicted. I didn't develop the dreaded mouth sores that end up putting patients on TPN (artificial food--a bag of yellowish liquid they infuse directly into your body, no chewing necessary). I didn't develop pnuemonia. I did spike one neutropenic fever, a really good one. Is this because I am special in some way? Hogwash! I played by all the rules. I did everything they told me to do. They were pretty sure they could save my life, so was I going to argue over taking handfuls of gut decontamination pills? Sure, they're big and nasty and they sit in your stomach like a huge wad of high density sludge. No one wants to take these mothers, but who wants to risk contaminating their gut?

I knew eating would start to feel like slicing off little bits of my body and throwing them on a composte heap. Not pretty. But I forced myself to eat some little thing at every meal. I dreaded being hooked to that TPN bag filled with unnaturally colored, liquidy goo. I was determined not to be. I did the obsessive hand-washing bit. I did my exercises, though with less gusto over time. Why was I so compliant? Why was I so willing to push "my way" to the side and embrace "their way"? Had I been brain washed?

No, I simply want to live. I want to go downstairs in the early morning light and sip coffee in front of the computer, watching the birds find ways to jump-start their new day. I want to lie in bed and watch my husband sleep like a baby (unlike me who sleeps like a battle's raging). I want to hear my daughter talk about her classes, about ideas she has for an ethics paper. I want to listen to my oldest son discuss race strategy for the big meet Monday. I want to talk baseball with my youngest son. I want to laugh at how ridiculous the dogs look after their shearing. There are lots of things I want to do, but doing just the ones I mention would make me very happy.

As much as fighting the power has its appeal, staying alive is more compelling. I have a long way to go before they pronounce me officially cured (and to be candid, I may never be cured), but I'm getting another shot at it. So, short of cheering for the Red Sox, I'll do everything they tell me to do.

Friday, September 21, 2007

Defying the Odds

White cell production continues unabated. More importantly, today's ANC (see yesterday's post) increased four-fold. One of the doctor's assistants came in today and said I'm the fastest cord grafter they've ever seen here at Dana Farber. She did suggest my size may have something to do with it. Dr. Antin says I shouldn't count my chickens yet because my counts could plateau for a while. I told him that as long as they plateaued at ANC 500, I didn't care, because I'd be out of here.

Surprise!!!! Mariel flew in from Phillie today to spend the weekend. She's here in my room right now, on the phone with Mark discussing running strategy. Marty's uncomfortably snoozing in a chair.

The better I seem to be doing, the harder it is to be trapped here. I need to be amused, and you, my readers, can help.

What day do you predict I'll go home, and why am I defying the odds?

Thursday, September 20, 2007

Production Starts Rolling Out the Whites

Time to break out the bubbly, although around here, that means taking out a carton of milk and shaking vigorously.

There's movement on the white blood cell front. For three days in a row, the white count has been bumping up a bit. It's impossible to know at this point if it's the Australian Whites or the homegrown varieties that are in production. Could it be North Fork, Long Island? The famous Napa-Sonoma regions of California? Iowa? (Rebecca: if there's Iowan wine, I expect a bottle of it, especially if there's any hint of corn on the label).

They won't let me out of here until my Absolute (no, not the vodka) Neutriphil Count is at least 500 for two days. Today, it was 48.6. Fortunately, once these suckers get going, there's no stopping them. It could happen this weekend!

But they are baby cells, and as such, often take longer to multiply. What with naps, diaper changes, and "staying on goal" issues we might be looking at a week.

There are still many challenges to face. The hospital part has been the first hurdle.

Ah, I can almost smell the fresh air.

Wednesday, September 19, 2007

Fever of 103

The long-awaited neutropenic fevers have settled in. This is the body's mechanism that kicks in when white counts are severely low. Basically, the body heats itself up to try to fry the bad guys. Usually, the fevers stay fairly low, hovering around 100 degrees. But sometimes they spike, and that's when the medical team swings into action, drawing blood, doing cultures, taking x-rays.

Last night, my temperature was 103 point something. Fortunately, Marty was there to hold my hand. This morning at 5, it was 100.1. This is probably what I'll be dealing with for the duration.

Which is why I was so pleased that no fewer than four of you left comments on yesterday's post indicating a favorite quote. That means I didn't have to do my early-morning research, which given the way I feel, would have been challenging. This means I won't have to do it for the rest of the week! Keep those quotes coming in.

Well, they just made my bed, so I think I'll crawl back into it. I'll try to write more later.

Tuesday, September 18, 2007

Plog Gets Bogged Down in Intestinal Distress

Marty says I can't disappoint my cheering squad, and that even though I feel like I've swallowed a large object no amount of Maalox will budge, I must make an entry in my blog. It will be short.

I will probably be receiving platelets every other day. On the days I don't get platelets, I'll be getting red blood cells. My white cells continue to remain at rock-bottom levels. They are also pumping me with potassium and magnesium, which have been leached out of my system by the chemo.

It's getting a little dull around here, but dull's better than too much excitement. I continue to look forward to your cards, calls, visits, emails, and blog comments.

One way I amuse myself around here is by posting a quote of the day on a whiteboard hanging in my room. The staff looks forward to it. If you'd like a shot at having your favorite quote spend a day on my wall, put it in a comment. You must give attribution (that is, who said it). Your name will appear below the quote (as sent in by ...).

Today's quote is
"What is written without effort is in general read without pleasure."
--Samuel Johnson

Sunday, September 16, 2007

What Did I Do To Be So Black and Blue?

I'll tell you what I did. I willingly allowed my body to be blasted with Love Canal's leftover toxic waste and then some. My blood report has AB Normal written all over it. In theory, if I were to cut myself, I'd bleed to death due to lack of platelets. But then, I have very little actual blood so I'm not sure what, if anything, would leak out. Apparently, being bloodless does not affect the desire to write about one's misery. Plog on ...

I was having a hard time mustering the strength to do anything this morning. My nurse breezed in and announced I had 3000 platelets (normal range is 150,000-400,000) and would have an immediate transfusion, probably around the time breakfast arrived. Eggs topped with mellow yellow sauce, anyone? The doctors came in and practically strip-searched me for evidence of bruising, a classic hallmark of very low platelets. They were disappointed. They planned to pre-medicate me to the max so as to avoid a nasty reaction like the one I had the other day. I broke out into exactly one hive (right in the middle of my forehead), so the transfusion was a breeze. My breakfast was quite tasty, too.

But my mood was black and most definitely blue. Today was the day of the CVS-Providence 5K, a race I competed in last year, just two months after my final chemo treatment. I ran that race because I could, because cancer hadn't vanquished me. Instead of joining thousands of runners in Rhode Island's capital city (including my sons Mark and Harry), I was to spend the day nestled in my bed like a Faberge egg. The day was getting more pathetic by the minute.

Here's what I did. I donned my race shirt from 2006 and vowed to run the race in 2008. I also ate a Kit Kat bar. So there!

I have some very sad news to report. Stacie Edmonds, a woman I know in East Greenwich who was diagnosed with brain cancer shortly before my leukemia diagnosis, died last week. We both had boys on the track team, and would sit together at various track events and banquets. We were the two bald ladies proud of our sons' accomplishments. Stacie leaves behind a husband and two children and many grieving relatives and friends. Peace, Stacie.

Saturday, September 15, 2007

Not-So-Mellow Yellow

Yesterday, my low platelet count meant I needed a transfusion. I've had many of these transfusions throughout the course of my leukemia. I refer to it as "mellow yellow" due to its rich caramel hue.

As with any blood product, you can have a reaction to it, from mild to severe. After all, it's someone else's fluid, not yours. The mellow yellow I received left me anything but mellow. First, I developed hives all over my body. Then I started coughing, and my nose became totally blocked. The nurse quickly gave me various antihistimines, which cleared up the worst symptoms, but I felt pretty out of it the rest of the day. I even developed a low-grade fever.

So, my friend Mecca who took the train from NYC to Boston mainly watched me doze. We were able to talk a bit during my more coherent moments.

I had spent the whole day looking forward to the Yankee-Red Sox game. Marty and I watched the first five disappointing innings. I could barely stay awake. Marty went home and I left the game on just in case the Yanks or I rallied. Well, I slept through the rally, but at least it happened. Today's a day game, so I should be in better position to watch it in its entirety. I won't be getting platelets today so hopefully my body will cooperate.

Just found out I'll be getting red blood cells today. Perhaps I'll get a boost.

Friday, September 14, 2007

Sunrise Over Boston

It looks like today will be one of the ten best days of the year. From my viewlet, not a cloud can be seen. It's supposed to be cool and dry, although that I can't confirm. You don't think they'd allow windows to be opened around here, do you? Mine is bolted shut. It's perfect baseball weather, as a matter of fact. And speaking of baseball, because you knew I would, the Yankees are coming to town. Three days of games between the Evil Empire and Red Sox Nation. (Last time I checked "empire" trumped "nation.") I'll be able to watch every game from the discomfort of my hospital bed.

The day might have started better, but then again, it could have been worse. At about 5 pm, the nurse comes in to draw blood and the aid takes vital signs. I try to stay very quiet, clinging on to sleep with all my strength. The nurse asks questions, which I don't answer. I don't want to be rude. I manage to fall back to sleep, but wake up around 6 pm with leg and hip pain due to a certain drug I'm taking to promote cell growth. I ring the nurse, who scurries in to hear my complaint, and then scurries out to get me something for pain. In the meantime, I sit up and look around for a glass of water, which I promptly knock over. Then it hits me--the relentless nausea. I grab a bucket and go through the motions. Meanwhile the nurse is back with pain meds, which I cannot take due to the nausea. The nurse rushes out to get some anti--nausea meds, and with luck, it will improve from here.

Today is my sixteenth day in the hospital, 7 days post-transplant. I am very fortunate that I haven't developed any fevers. I'm still eating fairly well. My sense of humor is badly bruised (damn those low platelets), but every so often it surfaces.

Carpe diem.

Thursday, September 13, 2007

Ploggin' On

Today the physical therapist arrived with some alternative exercises I can do to keep from turning into a pile of jelly. Frankly, these new offerings take almost no effort. One could easily fall asleep in the midst of them. The exercise bike has been replaced by a set of pedals that offer no resistance. You sit in a chair and place your feet on the pedals,and then you make some attempt at a pedaling motion. Pathetic. The therapist gave me a handout on exercises I can safely do in bed or in a chair. They're so safe and so effortless, you need a partner to check on whether you've inadvertently fallen asleep.

They started giving me a growth stimulating factor to boost white cell production, but it makes my legs, arms and joints seriously ache. This is mainly a problem when I want to go to sleep. Fortunately, they are very quick here to offer serious pain-killing meds. Suffering is kept to a minimum.

I've been here 2 weeks. Luckily, I haven't developed any fevers or opportunistic diseases. My days are all the same, but I'm not complaining. I'd rather have it stay nice and boring.

My only escape is dreams. Since I need to spend a lot of time sleeping to rebuild my blasted cells, I take full advantage of this activity.

Wednesday, September 12, 2007

The Bike is History

It's official. My platelet count has dipped below 35 so I'm not allowed to use the stationary bike anymore. It seems the docs are worried I might fall off it and bruise myself to death. What a way to go. Low platelets means that my body can't stop itself from bleeding. Once I fall below 10 platelets, they'll infuse me with some. The bike was wildly uncomfortable anyway, but it was a way to get some exercise. Maybe I'll start marching in place.

I can still use my arm weights, but I can't drop them on my toe. All sharp objects have been removed. If I had any hair to shave, I'd not be allowed to shave it.

With the drop in platelets, there's a corresponding drop in white blood cells. I've only got a handful of those. This condition is called neutropenia, and it calls for all sorts of safety precautions. That's why I'm in this special room with filtered air. That's why I can't eat fresh foods such as salad or fruit. Everything has to be cooked until it lacks flavor. My appetite is shaky enough as is.

I feel pretty good today.I finished one book this morning and plan to start another one after lunch. The chemo fog has lifted sufficiently so that I can concentrate fairly well. I do drift off to sleep suddenly, which is a good thing. I wish I could laugh more, but amusing things are severely limited around here.

I want to personally thank the Yankees for winning so many games the past couple of weeks. I look forward to this weekend's match-up between the Bombers and the Sox. Of course, being in the heart of Red Sox Nation, I have to be careful not to alienate my caretakers. They might take away the TV set claiming it's suppressing my red cells.

Tuesday, September 11, 2007

The Falcon

After I've exhausted most of the other activities in my room--and this does not take long--I stare out the large window to observe the weather, the pigeons, the colorful row houses, a swath of trees, and the various mechanical appendages that perch on top of the area's medical buildings. Every so often, a falcon swoops down and spends some time seemingly observing the same things I'm seeing. Only, he's probably scanning the area for lunch--a tender tasty mouse or a neurotic spinning pigeon who seems to have forgotten the term "survival of the fittest." So far, I haven't seen any squirmishes, although I know it's just a matter of time. My lunch, whether I want it or not, is delivered sometime between 12:30 and 1:00 pm. Unlike the falcon, my food must be cooked beyond recognition to kill any lurking bacteria. No pigeon pie for me, unless it's thoroughly cooked.

The doctors say all continues according to plan. Aside from occasional nausea and a case of the blahs, I'm doing alright. By tomorrow, I should have no white blood cells.

Let the obsessive hand washing begin.

Monday, September 10, 2007

The Waiting Game

I had a dream last night in which I became a part-time patient. As long as I arrived at the hospital by noon, I was allowed to be on the outside a certain number of hours each day. The problem was, I never seemed to be able to get back in time, so they revoked my privileges.

Most of the day, I wait. I wait for meals to arrive, pills to appear, nurses to hang bags of meds, doctors to shuffle in with nothing much to say. We're all waiting for my blood counts to go down (they are), and for my new cells to engraft (not yet). Something else we wait for, but about which nobody speaks, are fevers to develop, infections to creep in, bacteria and fungus finding a microscopic chink upon which to gain a foothold. If I'm lucky, none of these things will happen to me. But they are all possible. I have virtually no immune system, although I am taking prophylactic drugs to come to my rescue if need be.

Fortunately, visitors arrive to help break up the day, to take my mind off the waiting. Without them, I'd be a basketcase, wishing I were sitting on my front lawn sipping tea, or watching Mark & Harry run at Goddard Park, or taking Turbo and Asta for a walk, doing anything, anywhere that wasn't within the confines of this small sterile room, my prison.

Sunday, September 9, 2007

The Aussie Connection

Some of you have been wondering about references to Australian cord blood. One of the two units I received for my transplant was flown in from Oz. I'm pretty sure the other one was from the U.S. At some point, I'll have Australian blood flowing through my veins. I'll want to be stocking up on vege-mite (sp?) and Peter Carey novels. Anyone for Waltzin' Mathilda?

Things are pretty dull around here, which is a good thing. May they stay that way. I just took a "walk" out in the horseshoe-shaped pod, about 50 feet total back and forth back and forth. There are 8 other transplant patients on the pod, and a few non. We pretty much stay in our rooms because there's so little walking space, although I did see another woman out there who appeared to be about my age. I have to wear a serious mask when I'm out there, plus gloves. A little change of pace is good.

Marty will be here soon. Phone calls drift in. Still, the day has no shape and just spreads out over everything. I may have to break down and start watching TV.

This is my 10th day here.

Saturday, September 8, 2007

I'm Back

Thanks to Marty, I have an inkling of what transpired the last few days. Strong stuff. Happily, I am back, and will try to write a short entry. Nausea remains a problem, so the old heave-ho might cut this short ...

I don't feel quite like myself, but then I am not quite myself. I'm about 2 cups worth of other beings, and once they set up shop, they will be even more of Them. This is a very odd feeling, probably how people feel who've had organ transplants. Now the waiting game starts. The baby cells must migrate to my bones and start cloning and differentiating--all those things that cells do best. This process can take anywhere from 2-4 weeks. Patience is a virtue but it's never been one of mine.

I'm trying to force myself to eat whatever will go down and stay down. I just finished a bowl of corn flakes, which put me in mind of an off-off Broadway show called Angry Housewives. In the play, the mother screams at her kid, who's dawdling over breakfast: eat your f*cking corn flakes! I think of that line every time I eat corn flakes, and it always brings a smile. I need smiles.

Company has arrived--Mark and Marty. Gotta run.

Friday, September 7, 2007

Things you can do in 15 minutes

A short list as compiled by Marty

Have your 15 minutes of fame.
Get a car insurance quote.
Take a power nap.
Get a tan.
Take a coffee break.
Get an oil change at JiffyLube.
Watch the winner cross the line at a 5k, on a really good day.
Get halfway through a standard sitcom, so you can go get a snack.

Watch an entire portion of Umbilical Cord Blood Cells drip through a tube into a loved one's heart, to save her life.

Watch the second portion, 4 hours later.

Day minus 1, the real nitty gritty

It's actually early Friday morning, Day 0, but since Patty has been flattened for the last 24 hours, I, Marty, her B team, will give an update of yesterday's activities.
That's about it.

Now, since I am reporting as an observer, and since I, as Patricia's husband, feel particularly ineffectual through all this, my descriptions of yesterday may be somewhat dark, but I feel it safe to say, whatever I saw, the reality was worse.

Patty's nausea wasn't that morning sickness queasiness that has everyone else in the room smiling, or the nausea after a night's cavorting where you remember thinking "I really shouldn't have had the wine after drinking two cocktails, but it tasted so good with the food" type of nausea. This was her whole body trying to empty out a stomach that had been emptied out during the first 5 minutes of the day, yet continues to clench and unclench, clench and unclench, for hours without end. This is the nausea where a sip of water seems a foreign substance to your stomach, and it responds with gut-wrenching spasms. Nor is her headache the headache of your boss dumping on you when his boss dumps on him, or the kids yelling in the pool, or the music being too loud. This is a headache that refuses to let her sleep. She starts to drift off with the help of drugs, and the headache keeps her just enough in consciousness to know she is still in pain, and still nauseous.
The shakes yesterday weren't vanilla or chocolate. They were her muscles reacting to all the drugs in her system. The nurses assured us these were only slight tremors, and would go away. Only slight tremors. After watching Patty go through the first dose of the rabbit drug, the offhand remark "only slight tremors" is actually reasuring.
Amateur writers tend to overwrite: we try to come up with more exotic or unusual ways of saying or describing things, and we repeat them over and over. One of these phrases often over-used is "blessed sleep." Well, that is a cliche that describes a special type of sleep perfectly. That is the sleep full of wonderful dreams, where the sleeper is smiling and almost purring. That is the sleep where the sleeper awakes refreshed, stretches, looks out the window, ready to go head to head with the world for another day. A sleep that has you feeling you really are blessed.
That is not the sleep of day minus 1. The sleep of day minus 1 is just unconsciousness, if you are lucky enough. It is the body not understanding the onslaught of multiple poisons and toxins that are the treatment for the disease. It is your body telling your mind to try and shut down. In this state of sleep, there are no smiles. I look at Patty's face, and see her eyelids tensed as they attempt to deal with the aching pain in the temples. The edges of her mouth appear clenched to keep from gagging. During the short periods when the secondary drugs do work, her face muscles all relax and her whole body goes slack. For too short a time, I'm afraid. She drifts in and out, not feeling the passage of the time, not interpreting the data her senses are giving her. Trying not to feel.

I remember back to one of our first conversations with Dr. Thomas, when he was discussing treatment options. He said that best case scenario has days and months of hell, followed by cure. This was one of those days.

Wednesday, September 5, 2007

I Wanna Be Sedated

Rabbit Redux. The best thing about the third treatment is that they gave me so many drugs to head off any nasty side effects the rabbit might bring, I was more or less comatose for the entire afternoon. I was a boneless pile of mush, which was fine by me.

This morning, I woke up with hand tremors and a feeling that my body had been drained of all its blood and replaced with cotton. The tremors are likely to be drug-related, according to the docs. The other sensation is hard to explain and very annoying. I feel I'm not all here, and I guess I'm not.

It's Day -2 for transplant, which will probably be anti-climactic. I'll receive the stem cells in 2 batches, 4 hours apart. Pretty surreal.

That's all she wrote.

Tuesday, September 4, 2007

A Day in the Life

I decided to write this in the morning before I receive any toxins. Here's what a typical day is like in this joint.

Sleeping has never been my forte, so you can only imagine what it's like to sleep here. My room is right across from the nurses station, and they do a lot of yaking and laughing at night. They must be bored. At 5 am, my nurse arrives to draw blood. An aide tags along to take my vital signs. If I'm lucky, I fall back to sleep. Today I was lucky, but the machine I'm attached to (I have a constant saline drip) started beeping at about 6:15. Goodbye Shut-Eye.

I peer over at my bedside table to see two medicine cups filled with pills. I dutifully swallow all of them (estimated 30-40 pills per day). Then I do some mouthcare involving nasty rinses. This will hopefully ward off mouth sores later on.

I actually receive a cup of coffee at 7:40, woo-hoo.

After a short stint at the computer, it's time to get moving. I write a Quote for the Day on the white board (today's: "To be worn out is to be renewed."--Lao-tzu). Then I do my stretches and toning exercises, followed by 15 minutes on the bike.

Breakfast arrives, followed by a visit from the nurse or nurses. They bring me even more pills and discuss the day's "plan." Then the docs arrive. Today there were 5 counting the pharmacist. I've decided to stand while they speak to me because (a) I need more standing time and (b) I want to be at their level, literally and otherwise. Apparently, I'm the only person who ever does this, but who cares? When a visitor enters your house, you stand to greet them, and you only sit down when they do. Mostly we Q & A, and then they do the stethoscope thing. Bye.

After they leave, it's shower time, but since I have a catheter hanging out of my chest, I have to get someone in unhook my lines and put a special covering on the whole piece of equipment. Of course, this someone has to come back in and remove the covering when I'm done.

Then I'm free to do what I want until I get my chemo, which comes around noon. Lunch comes; visitors come; I use my laptop; my phone rings; I try to nap (impossible due to the many many disruptions). It seems every time I close my eyes, someone wants to give me meds, change my lines, take my vitals, check my bathroom output (yes, all bodily fluids are carefully noted and measured). No rest for the weary.

I rarely leave my room, because if I do I must be masked and gloved and it's really crowded out there. One advantage of going "out" though, is that I get to see what people look like without a mask. Everyone who enters my room must wear a mask and gloves, so I only see the top third of everyone's face. Sometimes I don't even recognize the people who've been in and out of my room all day.

And so it goes.

PRIZE!!! The first person to tell me who sprinkled the above line (and so it goes) through one of his most famous novels wins a line mention in my Plog.

Like Ol' Man River, I just keep rolling along.

Monday, September 3, 2007

Blame it on Drugs

Well, I've possibly developed dyslexia, and since it just starting occuring since I've been in the slammer, I'm blaming it on the drugs. I know what I want to say, but I'm having trouble writing what I want to write. Reversed letters, missing letters, added letters that don't belong. Then there's the getting tripped up on homonyms (right for write--I just corrected that one a few sentences back). This may not matter to you, dear reader, but to me it's one more sign of my temporary decline. Spelling, grammar, usage, the bon mot--these all matter to me. I've given Marty permission to edit the Plog, though not its content.

At least I can ride a bike without falling off it. Yes, the exercise bike, the one that was delivered when I was being prepped for the rabbit drug last Friday. Well, this morning I was feeling about 85-90%, so I decided to pedal for 15 minutes at a relaxed rate. Near the end of my ride, I had a visitor, Lizanne from Costa Rica. She's in town settling her daughter at Tufts, which is somewhere around here. We had a lot of ground to cover because we haven't seen each other in 2 years. She brought me 4 bags of Costa Rican coffee, my preferred brand.

Speaking of coffee, the so-called "coffee compromise" isn't working AT ALL. Today my 7:30 hand-delivered cup didn't arrive until my breakfast did, just before 9:00. That's right, I had two cups of coffee on my tray. I WANT HOT COFFEE. I don't want two cups of warm coffee. So I told my nurse I want to see the Nutritionist who thinks a single-cup coffee maker, one that ONLY I TOUCH, puts me at more risk than brewing it in the public pot. I tried to be nice. I really did, but now the gloves are coming off. In defense of the nursing staff, 7:30 is probably one of the worst times to get a cup of coffee for a poor transplant patient, because it's shift change. Okay, I'll stop. At least if I go off on a rant, you'll know I'm doing okay.

The rest of the day was uneventful, and pretty quiet because of the holiday. No noisy gangs of roving doctors/interns/residents/physician assistants jockeying for position out at the nurses station. I'm sure the nurses enjoyed it, too. My blood counts are still passable (though dropping); some of my chemicals are out of whack (to be expected); no nausea today (although the little patch they put behind my ear migrated to the middle of my neck during my shower so I'm not sure if it's lost some of it's efficacy).

I had a nice visit with Harry W. and his wife this afternoon, and of course, Marty was here for several hours.

Tomorrow the silly wabbit weturns (calling Elmer Fudd!), so who knows what or if I'll write. Do bunnies write?

Sunday, September 2, 2007

Another Bullet Dodged

Today was day 2 of the pesky wabbit. Since I felt pretty low already, going into to the infusion was worrisome. The nurse decided to mix up my pre-meds, giving me a different steroid and some hydrocodone to relieve my headache. I think it went a lot better than the other day, where I had spent the evening, all night, and into the early morning down the bunny hole. It must have seemed bad because Marty spent the night propped up in a highly uncomfortable beach chair.

After a slow start to the day, I did improve somewhat. I was able to shower,eat breafast, field phone calls, etc. Just as company arrived (Mark, Laurie, Harry) I started feeling feverish again and crawled back into bed. I felt bad that I didn't make conversation with anyone, but I think it was pretty obvious I was not in a chatty mood. I'll call the boys later to reassure them I'm alright.

Tomorrow, I just get one chemo drug, and this one doesn't do an number on me. Or at least it didn't the last time. One can only hope.

Saturday, September 1, 2007

Shake and Bake

I can't say I wasn't prepared for the side effects of the immunosuppressive drug made from rabbit serum (ATG). I mean, I knew it was serious when the nurse took out the epi-pen. The nurse monitored my vitals the entire 6 hours I was having the infusion. The first three-and-a-half hours passed uneventfully. We were able to joke about pesky wabbits, and told the old story with the punch-line/moral "hare today, goon tomorrow." Then it hit me. My temperature began to steadily rise and I got the chills. I was pretty much flattened for the next 14 hours, feverish and shaking. My nurse Vytus said they call it shake and bake. Cute.

Marty spent the night, but truthfully, I was not aware of most of what happened. I woke up around 8 am with a terrible hangover. By noon I was feeling better, but I slept a lot today.

I feel pretty good at the moment. My blood pressure's really low so they're bumping up my iv fluids which means more trips to the bathroom.

At least the epi-pen wasn't needed.