Saturday, May 30, 2009

Day at the Beach

Everyone needs to escape now and then. People in my situation, stuck in a hospital room having plenty of bleak, scary and sickening moments, often feel there's no escape. I found one.

I've discovered a way to visit every beach I've ever been to in Costa Rica. My mind focuses on these wonderful scenes and happy experiences, to the point where I can hear the surf and see palm trees waving in the sea breeze.

Yesterday was one of those especially trying days in which I had to travel to a very special beach, Playa Gringo, located on the mid-Pacific coast. Playa Gringo can only be reached by boat, really only by sea kayak, so it's ultra private. The white sand beach is crescent shaped, with perfect blue-green water, and is backed by a sheer cliff. You feel protected, as though you were in a cradle. The only people there are the people you know and want to be with. You can't help but relax, wrapped in a blanket of peace and happiness. It's truly a sanctuary.

I sense I'm going off the deep end a bit, so I'll end my description of paradise. You can see why I want to be there.

Update on yesterday's post: Since many of you have asked, I actually accomplished more than half the things on my to-do list despite the challenges of the day. I even did some of those things on Playa Gringo.

Friday, May 29, 2009

Goals for Today

1) eat chocolate

2) cast spell on evil nutrition nazi

3) invent under armour hospital gown

4) don't dream it--be it

5) create white blood cells

6) do stomach crunches (note: find stomach)

7) brush up my Shakespeare

9) laugh (and yeah I skipped #8)

10) live a little

Tuesday, May 26, 2009

My Blood Pressure Also Rises

Freedom lasted 28 hours. At least I had a chance to see my white azaelea in full bloom and enjoy a few meals. My temperature just kept climbing and I had no choice but to head back to my cell.

Sunday passed in a delirious blur. I finally mustered the wherewithall to start receiving some real pain meds instead of mere Tylenol, which when your fever is 103-104 is akin to putting a bandaid on a gushing wound. We settled on Percoset, and let me tell you, I had much better pain relief. The only problem is that no one had the cujones to actually write an order for this drug, so the nurse had to request it one at a time. Unfortunately, my doctor was away for the weekend. Sometimes the Percoset came too late. It's really true that you have to stay ahead of the pain.

A bit of good news arrived Monday afternoon with the report that I actually have some neutrophils showing up in my blood. They're the infection-fighting white blood cells that are the body's first line of defense against intruders. In theory, once these babies start being cranked out in larger quantities, my fevers should become just another nightmare memory to paste in my Bad Times scrapbook.

Today has been a much better day--no real fevers, although I recently registered a 100.6. But something got my blood pressure up today, and I want to unload my anger about it here. The hem-onc fellow came to see me this morning and it did not go well. First he told me I shouldn't be taking Percoset because it doesn't work for me.

Oh really? I was too polite to say, how the hell do you know, although I did insist it took a big dent out of my suffering. Apparently, pain is bad; but suffering is just part of the human condition and we must bear up under it.

Then he tried to delve into my psychological well-being, suggesting I consider taking an anti-depressant. Let me suffer but keep me numb. This was starting to feel like oppression. I told him I'd once tried Lexapro, but after 2 doses had to quit because it made me feel physically awful. He doubted that of course, saying how it was such a clean drug. Maybe he takes it.

I'll spare you the rest of the arrogance. Dr. Luvstosuffer ended up canceling the order that some doctor had finally written for Percoset as needed. I'm still fuming. I know I should just let it go, but I can't.

Update: my doctor came to see me a little while ago and re-wrote the order for Percoset, which with any luck I won't even need.

Small victories.

Saturday, May 23, 2009

Free, and Trying to Stay That Way

I was paroled yesterday around 7 pm. The conditions of my release are that I monitor my temperature carefully and immediately call the doctor if it hits 100.5. I also have to take it very easy since I won't be having any bloodwork until Tuesday, hence no transfusions either. I also have to have iv meds three times a day, which Marty will handle once the pump is delivered.

Marty made me a lovely linguine with white clam sauce for dinner. I managed to gain 10 lbs. in the hospital, all water weight. I'm a little puffy around the abdomen and my feet are a size bigger.

Excuse me while I go pour myself a cup of freshly brewed Costa Rican coffee. Maybe I should ring for the butler?

Friday, May 22, 2009

Tortured Notes

They're trying to kill me here. They've made me into a sad and grumpy borderline maniac. Tell me if this doesn't resemble waterboarding.

They're pumping me with fluids even though my fever has been gone for almost 48 hours. I spent the entire night peeing like a horse and drowning in my sweat. I dreamed about floating down a river. I was in an aqueous dishumor.

This morning when my new nurse walked in (her name is Cherish), she mentioned something about hanging my next bag of meds. After my harangue about how the dam was about to break, I said I was pretty sure that antibiotic had been eliminated. Off Cherish marched to call my oncologist and the Infectious Disease Doc.

Good news: no more iv fluids, and yes, that drug is out. The complaint switch is stuck on the on position.

My doctor wants to keep me here over the weekend. I'm already a piece of heavily crazed china bordering on breakage into a million pieces. I'm going with Psycho Girl when he comes in. The problem is, I'm so angry my acting skills might be shot. Should I perhaps roll up in a ball on my bed and be mute? Should I be a fire-breathing dragon and go for the burn? Rational logical charming PJ's not working for me here. Dragon or fetal curl?

No woman, no cry.

Thursday, May 21, 2009

The PJFF Wants YOU!

The PJ Freedom Fund is now accepting contributions. Here's what I need:

*pies with tools inside
*tickets to a remote (tropical) location where coffee is grown
*a new identity to fool those bad ass leukemic clones
*an order of La Cirque's Pasta Primavera

Can someone find out why my hair hasn't fallen out yet? It should have by now. I don't feel like shaving.

After reading an article about how the H1N1 virus doesn't seem as virulent among those born pre-1957, I wonder whether I fall into the stats or the cracks. I was born in 1954, so I could theoretically have some immunity to this disease, a good thing because I'm sure I'm in the high risk category for it. But it's complicated. My old immune system was fried out of me during my transplant and replaced by the immune systems of two babes born in the late '90's. I suppose if they had acquired some natural immunities from their mothers, they'd give me a little protection. However, their mothers were probably born post 1957. Poof. Immunity gone?

And now we shall all sing:

Way down in hospital land
tell all physicians to
let my pj go
let my pj go
let my pj go.

Wednesday, May 20, 2009

Jottings of the Day

In the hospital, life gets reduced to the elementals. My time here is spent undergoing various tests (liver looks good!), getting and giving fluids, suffering feverish episodes, and trying to keep my psyche from imploding. I have removed it and hidden it in an obscure drawer for safekeeping.

I've basically been transformed into a large and fertile irrigation ditch. Liquids go in, liquids go out. Fevers bubble and brew.

I realized I haven't been wearing earrings.

Today I ranted about musicals and why I hate them, especially The Man of La Mancha.

My brief taste for hospital food must have been a feverish delusion. I just sent the meatloaf marching.

My childhood sweet tooth has emerged and must be fed vast quantities of sugary foods or it is very angry.

I think I'm feeling a little better.

Tuesday, May 19, 2009

Hot Hot Hot

Because I have so few white blood cells, my body decided to start cooking me from the inside. It started late on Friday, just after I watched my tuxedo-clad baby drive off to meet his date for the prom. Tempus fugit.

By Saturday morning I was back in the hospital, where I remain. Every 4 to 6 hours I spike a fever, despite being pumped with antibiotics and anti-fungals. No specific causes have been identified as responsible for the fevers. It's just that I'm in a state of neutropenia, low on infection-fighting cells, and my body's natural response is to use heat as a weapon.

Somehow, I manage to have an appetite and have been tolerating the hospital food. I am ruined.

Thanks everyone for following my story. I love reading your comments and emails. Any day now, blood cell production should kick in and these feverish days will be just a bad memory.

Thursday, May 14, 2009

Hemoglobin the Hard Way

My clinic appointment yesterday was grueling. I was in dire need of blood, so my doctor ordered 2 irradiated units. I had already negotiated with my doctor to eliminate the steroid pre-medication (I still got Tylenol and Benadryl) because it had made me so nutty during Monday's platelet transfusion. That turned out to be a very bad idea.

Half an hour into the transfusion, they checked my vitals and my blood pressure was something like 77/46 and my temperature 101 degrees. Oops. The transfusion was immediately stopped and I had to get the steroid anyway and wait for my signs to improve. Interestingly, I didn't feel woozy or even especially hot. Whatever. An hour or so later, blood was once again flowing and I appeared to be fine. They checked my signs every 20 minutes to be sure.

Transfusion #2 didn't get underway until 5 pm. The additional pre-meds made me jumpy, and the easy-chair I was sitting in had lost much of its ease. They'd pumped me full of fluids, so I spent much of the time wheeling my pole into the bathroom (my, that sounds off-color) and then walking back to my uneasy chair.

We sludged out of the clinic at about 7:15. The blood had given me a bit of a boost I suppose, but I was way too exhausted to notice. I slept most of the ride home.

I'm not even going to try to mine this little episode for a hint of humor or a silver lining. It was bad; I got through it; this disease is awful.

Wednesday, May 13, 2009

Navigating the Nadir

The only body part firing yesterday was my brain. I guess that organ takes minimal blood cells to function properly. This may be debatable.

I spent most of the day sitting, chatting on the phone and writing. I wrote a letter to President Obama about some policy issues as they currently affect me and my family. At one point, I got off the couch and took a shower, and then went on a slow walk with my husband. The couch beckoned once more, and there I remained parked for most of the afternoon. Time passed extremely quickly for some reason, and before I knew it my husband was back from shopping and my sons home from school/practice. It was time to move on to the next room, where I draped myself over my chaise and demanded tea and crumpets. We were fresh out of crumpets so I had a biscuit.

My husband made dinner and I read a little. I listened to all four sides of Stevie Wonder's Songs in the Key of Life. I even read the liner notes (yes, I'm talking records here; we actually have a turntable). This was good for the soul. Thanks, Stevland.

I managed to stay conscious until roughly 9 pm. What I don't understand is, if I'm essentially doing nothing, moving oh so slowly through the day, why is time speeding up? It's a conundrum wrapped inside a paradox parading as an enigma.

Monday, May 11, 2009

Mellow Yellow

As expected, I needed a platelet infusion today. My CBC showed I only had 3,000 of those clotting babies, whereas normal is 150,000-400,000. It's possible that merely typing this post is risky. I will type softly.

My reds are also on the low side of low, but my doctor opted not to transfuse me as I'm asymptomatic, that is, I'm still breathing. Looks like I've reached the "nadir" in my counts. This is a certified SAT word, so if you know a student currently embroiled in applying to college, be sure to mention this. Nadir=the pits, the lowest point. That's where you'll find me.

I've also been running a low-grade fever since yesterday, 99-100. This is my body's response to the low white blood count situation. I'm willing myself to stay under 100.5, because when my temperature hits that, I'm cooked. I have to call my doctor and most likely be admitted to the hospital for antibiotic infusions.

You may be wondering why I've titled this post with a Donovan tune, other than the fact that I'm probably doing way more drugs than he did when he wrote it. Mellow Yellow is my name for a bag of platelets which are a soft, creamy yellow. I guess it did mellow me a bit, because I slept away the afternoon.

Saturday, May 9, 2009


I picked up Kafka on the Shore, by Haruki Murakami a year ago at Barnes and Noble. The book sat on my bedside table collecting dust and shooting me the hairy eyeball from time to time. Twice I tried to read it, and twice I failed to get beyond the first chapter. Some books just have to be read at the right time, a time that had not yet come for Murakami's book.

Apparently, six days of chemotherapy and its lingering effects put me where I needed to be (trapped?), and I finally made it to the second chapter. Maybe the fantastic, the gruesome, and the incomprehensible go down easier when the reader is experiencing her own tenuous grip on reality. Brain damage is also a handy excuse for being unable to comprehend much of what happens in the novel. I was a lot less likely to question serious breaks with reality, a lot more willing to accept the odd, the outrageous, and the frequent challenges to the space-time continuum.

Kafka on the Shore is partial to libraries, to books, to metaphor--my safety zone. Its two main characters include the 15-year old Kafka, who's a voracious reader, and an older man who's completely illiterate. A major theme of the novel (and a favorite of mine in general) is how memories are made, stored, changed and passed on. Kafka walks away from the novel with a memory of his mother, a personal fulfillment of his quest.

The book is mysterious and compelling. I was hoping for a few more "answers" but settled for the fleeting insights and tenuous connections drawn between past and present, male and female, violence and kindness. Kafka on the Shore is at once a song, a painting and the novel itself. You'll have to read it to know what the heck I'm talking about.

In Leukemia News, I'm remaining fever-free and struggling to put some shape into my days, which float by cloaked in shapeless housedresses--a flash of floral and then they're gone.

Thursday, May 7, 2009

No Neutrophils

It's official. The chemo has knocked out all of my neutrophils, the first responder white blood cells that appear at the scene to do battle with pathogens. I'm on my own now, trying to limit my exposure to bacteria, fungi and other nasties.

I don't know if my defenseless state had anything to do with it, but I spent much of yesterday parked on the couch. Marty and I took a short walk in the afternoon, and that used up all my energy. I spent the rest of the day reclining on my chaise longue, drifting in and out of consciousness. I managed to drag myself to the dinner table and consumed two enchiladas (Sexto de Mayo--we missed Cinco). Then I did another hour of couch time before crawling up to bed at 8 pm. You'd think that after 10 hours of sleep I'd be raring to go, but the only place I'm raring to go is back to bed.

This extreme lack of energy is normal--my blood cells are dead or dying. Hopefully, the leukemic cells are experiencing a slow and painful death, Geneva Convention be damned.

No plans for the day. I'm giving myself up to extreme lassitude. Were that I were relaxing on an empty stretch of beach sipping a margarita.

Tuesday, May 5, 2009

Infinite Jest--What Would You Call It?

What a difference five days make. When I left here last week to enter the hospital, my yard was still cloaked in grays and browns. A little warmth and a bit of rain have transformed the place into a lush green landscape punctuated with pink blossoms, arching forsythia and the occasional daffodil and hyacinth. For the first time in years, the dogwood is actually blooming. In contrast, I was a picture of rosy health last week, and am now reduced to a barren landscape.

I'm parked on my chaise longue feeling like a slug, and probably not looking much better than one. On one hand, the toxins are exiting my body; on the other, my counts are dropping and I feel listless and unmotivated. I have surrounded myself with heady reading material. Even if I fail to turn a page, I am among books I hope will lend me the gravitas I currently lack.

Kafka on the Shore is providing me with gruesome scenes involving cat decapitation and quirky plot twists. I have no idea where this book is going, but it's certainly surprising. In the What Was I Thinking Category, I ordered Infinite Jest from the library, a 1000+ page footnoted tome I've been planning to read for some time. Now that I have the luxury of huge blocks of time waiting to be shaped and managed, I hope to finally tackle this heavy book. And I do mean heavy. I can barely lift it.

Time for a nap.

Sunday, May 3, 2009

All My Trials, Soon Be Over

The cumulative effects are starting to kick in. Eating is a challenge. The three books I brought to the hospital thinking I'd get some reading done mock me from across the room. I think it's Sunday.

I get one more round of clorfarabine tomorrow and then I'm done. I plan to get out of this place Tuesday. The crabapple's in full bloom, one of the most beautiful sites you'll ever see in my yard, and I won't miss it.

Friends, I feel your power pulling me toward the light.

Saturday, May 2, 2009

No Exit

The visitors come and go, perhaps talking of Michelangelo, I wouldn't know. I drift in and out of consciousness as the chemo seeks and destroys the bad guys, taking out good guys, too. I can't be much of a host, so my guests amuse themselves while I lie in bed uncharacteristically mute. The day passes, as does the headache, thanks to Percoset.

Karen and Rob have driven down from Boston, bringing me coffee beans from their finca in Costa Rica. They chat with my brother George who's flown in from Atlanta. My husband and son Harry also come and stay for a while.

At this point, the haze has worn off and I manage to keep my head upright for a time. My son Mark arrives and spends about three hours with me, which is nice because we don't usually have a chance to just hang out and chat about nothing and everything. I'm honored he's chosen to spend his Friday night with me instead of with his friends. I feel like I've gotten something right.

The night is punctuated by headaches and beeping infusion pumps, an ocassional ambulance siren piercing through the hospital hum. I dream that I sneak out of the my room and manage to drive myself home. But I've forgotten my clothes and I feel guilty about letting down my doctor. My bold escape feels childish, and I realize it's no escape at all. Leukemia sounds an all-points bulletin, and I am swiftly rounded up and returned to my cell.

Then Day 4 begins.

Friday, May 1, 2009

Temporarily Offline

Day 2 of my treatment starts off bright and productive. I read Kafka on the Shore, answer emails, receive phone calls, and peruse the LLS Forums. I do 10 laps around the unit, shower and devour my breakfast. It could be like any other day, but at noon the pre-meds arrive along with an unappetizing lunch. Two hours of ara-c followed by a short break and then some more pre-meds, this time a steroid, ending with an hour infusion of clofarabine. This flattens me, and although my brother and my son are in the room with me, I am alone and feeling the effects of the toxins. I drift in and out, and finally ask for some iv ativan.

Everything seems difficult to do. Just getting into the bathroom requires untangling of wires and jockeying the plugged-in pole hanging with meds into a small space. I manage. Between my dance pole, my laptop with dial-up cord and my cell phone plug, wires snake everywhere and follow along behind me as I go through the motions.

I could be at home having dinner with my family, just like any other night. But I'm here in this sick room while life continues without me. How did this happen?