Wednesday, January 30, 2008

Tell Me a Story

I just spent two days with my friend Bob at the SF VA Hospital. During that time, we didn't watch TV or read, but we did spend a lot of time telling stories.

At first, the life stories Bob shared seemed random and unconnected. But it didn't take long to see a theme emerging. In each story, Bob is cast as the wandering adventurer who uses his wits and charm to overcome obstacles. ("I was hitchhiking through the Appalachia Mountains and needed a place to spend the night. . .")

Bob often shared a story with one of his doctors, a competent crew of young residents from UC-SF. Some looked confused, as though they were trying to figure out the point of the story. Others looked like they hoped the story would end soon so that they could continue their busy rounds. But one female resident, my favorite, would listen to Bob like he was her favorite great uncle. She had all the time in the world.

She must understand the healing power of stories. She knows they aren't the incoherent ramblings of a doddering patient. They are a patient's way of telling doctors, "See - I wasn't always frail and helpless like I am now," or "Please see the complete me."

The stories are also Bob's celebration of who he was and a reminder that perhaps the wandering adventurer who overcame obstacles with wit and charm still exists in his older, cancer-ravaged body. Could he channel that same charming adventurer to help him overcome the greatest obstacle of all?

I hope that Bob will keep telling his stories - to himself, to friends, to doctors, to anyone who will listen. I know I'll be there to listen as much as possible.

Sunday, January 27, 2008

SF Here I Come

I've already postponed my trip to SF twice this month, but now that the white blood counts are flying high, I'm ready to fly up tomorrow for a three-day visit.

The focus this time will be more on friends and less on food. I plan to spend as much time as possible with my dear friend Bob (age 81), who is hospitalized at the SF VA Medical Center. Of course, I'll get the chance to compare the food at the VA with the grub at CoH. We'll see how the VA stacks up when it comes to menu variety, service, presentation and flavor. As much as I complained about the chow at CoH, I have a feeling it'll win the "battle of the hospital food service competition" hands down.

Thursday, January 24, 2008

The Skinny on Susan

I've finally tapered off the Prednisone, and none too soon. Since my last post, "Bring on the Calories," I've continued on my binge eating "Booty or Bust" food tour of Los Angeles. But in spite of going hog wild over high fat foods, the needle of the scale moved two more pounds in the wrong direction yesterday. (I'm down to 118, according to the scales at CoH.)

It seems that the plight of a rail-thin woman eating her way through Los Angeles in pursuit of pounds (and curves) is not generating a lot of sympathy. I was trying to think of a few items that might evoke even less sympathy:
  • Britney can't manage to save any of her $737,000 monthly income (according to US News & World Report).
  • If John Edwards won the presidential election, he'd have to downsize from his 25,000-square-foot mega-house to move into the White House.
  • Angelina Jolie was snubbed by the Oscars.

What would you add to the list?

I'm also glad to be off the steroids because I don't feel like "myself." I haven't experienced any of that "inappropriate happiness," but I've felt lethargic on the outside with a calorie-burning motor racing on the inside. The end result is a snappy impatience that I usually save for my closest family members. I nearly got into a bathroom brawl with the hipster mom of a toddler in Silver Lake. I was itching to get into a fight with a man at the bar at Smitty's (but walked away instead).

The best news and cause for celebration and appropriate happiness are my blood counts. I look at them and can't believe they belong to me! I'll never call my stem cells "sluggish" or "under achievers" again.

Day 62, Wednesday, January 16, 2008

WBC 4.0 (4.0-11)
RBC 3.37 (3.8-5.2)
HGB 11.1 (11.5-15.5)
PLT 55 (150-350)

Day 68, Monday, January 20, 2008
WBC 7.0
HGB: 12.0
PLT: 90

Tuesday, January 22, 2008

Driving for Noodles

How far would you drive for a good bowl of noodles? (The question reminds me of that old cigarette jingle, "I'd walk a mile for a Camel.") Now that the simple bowl of ramen has nearly reached cult status in Los Angeles, I think many ramen lovers would answer "far." From the San Gabriel Valley to J-town. Down the 405 to the South Bay. Across town to the west side.

And why venture so far from home? To paraphrase notorious bank robber Willy Sutton, because that's where the ramen is. Or at least the ramen worth eating, according to a list compiled by rameniac food blogger Rickmond Wong, dubbed the "Rock Star of Ramen" by the LA Times.

In my quest to visit rameniac's top five picks (I have two more to go), I'm logging extra miles on the Prius and contributing a little more to global warming.

But it is possible to satisfy a yen for ramen while being kind to the planet, thanks to "the rule of three," a little life-changing strategy I picked up from Paula. It's not as kinky as it sounds. The trick is to cluster a far-flung outing with two other nearby activities.

Since Santouka, Wong's number-one favorite ramen shop, is located in the food court of the westside Mitsuwa Market, this took less effort than making a Cup O' Noodles.

I stopped at Mitsuwa to pick up special o-sembe, or rice crackers, to include in my Dad's birthday package. He became addicted to these during the occupation of Japan more than 55 years ago. And, wouldn't ya' know it, you still can't buy a rice cracker anywhere near Ravenswood, West Virginia.

I also purchased prizes for my niece Emily, one of the two winners of the "What Would Susan Eat" contest. (Since she lives in a Duke's state, she gets an "only in LA" prize.) I chose these snacks for my great nephew Will because I think it's my job to remind him that he's one-eighth Japanese.

I couldn't resist buying these ultra-thin, chocolate-covered MEN'S Pockys for Emily. What makes this product masculine? The bitter chocolate? The dangerous packaging with chocolate draped like a noose? The smoking cigar effect? Are men actually purchasing these or are women buying them for the men in their lives? My hunch is that rebellious women are rising up and scarfing down on this "forbidden" confection. "Men's" Pocky be damned!

My friend Barbara F, the other winner of the WWSE contest, lives nearby and joined me for a bowl of ramen. Here she is with her coveted jar of Duke's mayonnaise.

So far, so good. I've caught up with a friend. I've passed the mayo. I've purchased snacks from Mitsuwa for a birthday gift and a WWSE prize. Isn't that already more than a threesome? But what about the ramen? Would eating a superior bowl of ramen be like hitting a home run?

Ah, the ramen. Beautiful presentation. Slightly chewy noodles. Complex broth. Buttery pork. I think it was the best bowl of ramen I've ever had - a home run out of the park with the (rule of three) bases loaded.

How far would I drive for a bowl of noodles? Definitely to Santouka again and again.

Santouka Ramen
Mitsuwa Market Food Court
3760 Centinela Ave.,
Los Angeles, CA 90066
10:00am - 8:00pm

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Monday, January 21, 2008

The "C" Word

Not cancer.

Not Cindy.

The word of the day is chorizo.

For the uninitiated, chorizo is a fatty pork sausage seasoned with chili, paprika and garlic. Chorizo—and eggs—is what Susan tucked into this morning. (Oh, and rosemary potatoes, tortillas, and a dab of guacamole.)

Now that I'm over my cold, I figured it was safe to see Smooky. We decided to meet at The Taco Spot, one of our favorite hangouts, for a late breakfast. Her platter was enormous, but she ate most of it, and then packed up the rest for an afternoon snack.

I'm here to say she is chowing down the calories. But when will her metabolism get the memo?

Our girl is skinny. When she says she has "no junk in the trunk," she's lying like a dawg. There is no trunk! She has no booty.

Frankly, I don't know how her pants stay up. (Suspenders? Duct tape? Faith?)

However, now that her taste buds have bounced back, she can once again enjoy subtleties in flavor and seasonings. And if she keeps eating like a longshoreman, she's bound to return to her fightin' weight very soon.

In the meantime, feel free to suggest your favorite high-calorie, diet-busting treat. You may inspire Susan to binge on your behalf.

Here are my ideas:

1. Thirsty? Conserve water. Try a nice milkshake or two.

2. Grilled cheese sandwiches with double cheese.

3. Deep fried…anything.

Bring on the Calories!

After my first round of chemo in 2007, my City of Hope dietitian advised me to concentrate on eating "nutrient dense foods." I started scrutinizing every morsel of food that went into my mouth and was surprised to find out how many "nutrient neutral" foods I was consuming.

When I replaced filler foods with power-packed ones, a funny thing happened. I slowly started to shed the extra weight I'd gained during my "middle-age spread." It was my new way of eating, not the chemo or the cancer, that brought me down to a look I like to call "willowy" or "svelte."

But then I checked in for my stem cell transplant in November. With no appetite, I peeled another five pounds off my already lean frame. No mystery there.

My weight remained the same during my recent 10-day stay, but a strange thing has happened since I've returned home. In spite of my switch from "nutrient dense" to "calorie dense" foods, I've lost another five pounds. Today at CoH I tipped the scales at 120 pounds on a 5'10" frame. I look in the mirror and I don't like what I see. I no longer see svelte or willowy. I see skinny.

In most cases, Prednisone packs on the pounds, but Dr. Forman said that, in some cases, it speeds up the internal metabolism and patients actually lose weight. What a diet!

Since my last weigh-in five days ago, I've eaten (among other things) crunchy egg rolls from Golden Deli; Vietnamese Banh Mi sandwiches from two Rosemead shops; cups of French-pressed coffee with sweetened condensed milk; Indian food from Tantra in Silverlake; rich home-made pumpkin soup with half and half; my favorite steak chilli and corn bread from Smitty's; chorizo and eggs with all the high-fat trimmings at the Taco Spot; gelato with macaroons from Pazzo Gelato; and more than a dozen of "Alexis's favorite chocolate chip cookies" from the Martha Stewart recipe.

After I taper off the Prednisone, my metabolism will likely return to normal. In the meantime, it's like being in high school again. I can eat all the high-fat foods I want all the time and not worry about gaining weight. (Actually, it's better than high school 'cause now I don't have to worry about a zit erupting on my chin or if MJ knows I'm alive.)

Call me lucky if you like. Just don't call me skinny.

Thursday, January 17, 2008

Homecoming Accessories

I checked out of Hotel Hope on Tuesday with two bags of dirty laundry, a half-used box of Kleenex and a dazzling set of new accessories.

Drugs: I'm still taking the steroids and a counter full of newly prescribed antibiotics.

Temporary Disabled Person Parking Placard: What's good in more places than the cancer card? What has more credibility than chemo brain? My Prius's latest accessory, the temporary handicapped placard, is good until July 2008, but I think I'll ditch it before the end of the month. And, no, you may not borrow it for your trip to the mall.

Flying Report Card: I went in for a blood draw yesterday and found that my blood levels are soaring again.

Day 55, Wednesday, January 9, 2008
(Numbers in parantheses are normal ranges.)
WBC 0.7 (4.0-11)
RBC 2.44 (3.8-5.2)
HGB 8.2 (11.5-15.5)
PLT 37 (150-350)

Day 62, Wednesday, January 16, 2008
WBC 4.0 (4.0-11) NORMAL!
RBC 3.37 (3.8-5.2)
HGB 11.1 (11.5-15.5) ALMOST NORMAL!
PLT 55 (150-350)

Appetite: For the first time in nearly three months, I have an appetite (thank you, steroids), and I can actually taste the food. I celebrated my stellar blood counts and the return of my taste buds by stopping at a whole-in-the-wall Mexican joint that's just a few blocks from CoH.

When it comes to Mexican food, I say don't listen to a north-of-the-border food critic, even if he does have a Pulitzer Prize on his wall (or is it on the mantel?). Listen to the CoH cleaning staff and watch where the gardeners go. They steered me to La Paloma, where I enjoyed a home-made pork tamale and bowl of cocido, a traditional beef shank vegetable soup.

Tuesday, January 15, 2008

Thank You, Arigato, Merci, Gracias

I'm thankful in every language.

Thankful that I'm going home today. Thankful for the amazing care I've received. Thankful that my lungs are responding to the steroids. Thankful for all of you who helped me make it through one more unplanned adventure.

Monday, January 14, 2008

Tomorrow, Tomorrow

I may not be singing that soulful "Monday, Monday" classic today, but I'm optimistically belting out "Tomorrow, Tomorrow" as I pack my PJs. It looks like I'll be checking out of Hotel Hope on Tuesday.

If you missed my comment on yesterday's post, my lungs are rapidly returning to normal. Yesterday, I walked three laps around the floor without extra oxygen. I was breathing, walking and talking simultaneously and felt tintillatingly alive. I felt like I was in one of those farcical musical scenes from Scrubs. Doors opened. Imaginary champagne bottles popped. Other patients grinned with envy as they watched me performing this amazing, three-task feat.

Does it get any better than that? I can only think of one improvement. If someone had pitched a Porto's potato ball at me, I probably would have fallen over in a fit of ecstasy.

Sunday, January 13, 2008

Headlines from Hope

  • NO Aortic Infection: The weekend cardiologist stopped in yesterday to let me know that the results of my echo cardiogram were more "legible" this time. Conclusion: I don't have a bacterial infection, I won't need to have the invasive transesophogeal electrocardiogram and I won't need to be on antibiotics. What about that murmur? Just a simple, unrelated, non-threatening mitral valve prolapse.
  • Breathing Improving: I can breathe in comfort without my oxygen tube for longer periods. A trip to the bathroom and shower requires a one-minute, not a one-hour, recovery period. And, just for fun, I did a few easy laps around the bathroom yesterday and didn't collapse. These are major improvements.
  • Monday Discharge?: I brought this up with Dr. Snyder, my weekend doctor (and associate director of the hematology department), and he said it was not an unrealistic goal.
  • Three Cheers for the Team: I've met six of the doctors on "Team Susan." They have, without exception, been competent, caring and compassionate. Best of all, they seem to continuously communicate with one another (and with me) about my case. Even though they haven't had all the "answers," I've felt confident that I've been getting the best and most timely of care.
  • "Simon, Theodore, ALVIN!": You'll have to go see Alvin if you're in the mood for puffy-cheeked chipmunks. In spite of five days of 'roids, I still (knock cheeks) don't look as if I'm squirrelling acorns. But I have had enough of an appetite boost to put me just a few nuts short of consuming a full plate of hospital food. That's a major improvement and accomplishment. And I'm grateful that the 'roids haven't kept me from sleeping like a baby every night.

Friday, January 11, 2008

Boredom Busters

If you blog it, they will come.

Yesterday I wrote about boredom and my craving for company, and today I've had a steady stream of visitors from 8 am until 8 pm. I even got to play a rousing game of Dogopoly with my young buddy Nina. When I wasn't chatting or playing with friends, I was touching bases with my pulmonologist, consulting with my cardiologist, talking with the social worker about getting a temporary disabled persons placard, having another chest X-ray or repeating the echo-cardiogram exam.

Who had time to be bored? And, more important, who had time to be depressed? Not me.

My cardiologist listened to my heart and confirmed the heart murmur first detected by my pulmonologist. Mix that murmur with a suspicious-looking echo cardiogram and other observaions, and the doctor's conclusion was "it [the aortal area] looks and behaves as if it's infected."

Next week, I'll be undergoing a transesophageal electrocardiogram (TEE). This tube-down-the-throat diagnostic procedure will verify the infection and determine if I need a two-week or six-week course of antibiotics. My lungs are still being treated for the infection and/or the chemo damage. The doctors have me covered!

Based on observations of today's breathing difficulties, my cardiologist said that he thought that an early-week discharge was unrealistic. ("You can't even carry on a conversation without getting winded.") But, then again, he doesn't know me. I can already see myself skipping down the hall without my latest fashion accessory, the breathing tube.

So . . . When's the (discharge) date?

ISDK (I still don't know.)

Doesn't this bring you back to the pre-auto-stem-cell-transplant waiting game when I had no idea when I'd be hunkered down for my month-long stay?

My temperature and blood pressure are normal, my chest X-rays look relatively clean, and I'm feeling a little stronger every day. The problem is that I'm still a long way from feeling back to my "old self." You remember "her" - that wild and crazy Susan who could go to the bathroom without an oxygen tank.

I saw Dr. Dunst, my pulmonologist, yesterday and asked him why my body still feels so ravaged. He said that I'm like a house that's just been on fire. Something (we still aren't sure what) clearly created the devastation. The flames are no longer burning, but the evidence - the destruction, charring and ashes - are obvious. It takes time to rebuild. Just call me "this old house."

Dr. Dunst did not share with me that he heard a heart murmur. Dr. Forman broke this to me this morning and said that he's sending up a cardiologist to listen to my heart today. I'm trying to remain calm about this, if for no other reason than to keep from hyper-ventilating.

One benchmark for discharge will be the ability to walk more than a few feet without oxygen. We didn't even discuss the blood counts, which are continuing to slip slightly each day.

The boredom is slipping away, and I'm working hard to not let it be replaced by another emotion.

VERY POSTIVE UPDATE (1:40 PM): I just received an email from Dr. Forman, who was impressed with the looks of today's chest X-ray. A discharge of "early next week" looks entirely feasible. YAHOO!

Thursday, January 10, 2008

The only person who's bored is . . .

. . . a bore himself.

I think I first heard these words from Miss Cosgray, my third grade teacher at Broadway School in Clarksburg, West Virginia. I took the words immediately to heart and can honestly say that I've seldom been bored since hearing them nearly 45 years ago.

Many people assume that because I'm what Japanese-Americans call a "Gasa-Gasa girl," a restless, runaround gal looking for stimulation, that I'm easily bored. The truth is that I'm highly adaptable and can find stimulation in the most unlikely places - like a hospital room. Of course, when sleep is on the agenda for 60% of the day, it's easy to stay stimulated. But, now that I'm on steroids, I no longer have the need for ZZZZs.

I'm now going to utter those unspeakable, unthinkable words: I'm bored. I'm bored with being here. I'm bored with the food. I'm especially bored with my lack of mobility. I got in "trouble"this morning for removing my breathing tube and sneaking to the bathroom instead of using the bedside commode perched two feet from my bed. My resulting coughing, wheezing and hyperventilating were like a five-star alarm.

I did manage to walk 100 feet yesterday before collapsing in a chair. I was on my way to visit my nurse friend Melanie's station, but she sent me straight back to my room because of my low WBCs. So, basically, I've been isolated in my room since I arrived on Saturday night. My only forays out of the room are by gurney or wheelchair to the X-ray room, operating room (for bronchoscopy) or CT scan room.

In addition to Miss Cosgray's words of wisdom, one of my own life platitudes has been, "The secret to happiness is figuring out what kind of and how much stimulation you need and making sure you get it."

To that end, I'm seeking permission to attend the hematology patient's exercise class on the fifth floor tomorrow at 11 am. (I'll bring a portable oxygen tank with me, of course.) Believe me, it's the simplest of movement ("Raise your left arm, GOOD, now raise your right arm"), but I desperately need the social aspects of the class. The revolving door of medical professionals who visit my room is just not meeting my need for socialization.

I've had at least one non-family visitor each day, and it's lifted my spirits tremendously. So, if you have the time for a brief visit, I will undoubtedly still be here until this weekend and would look forward to the company.

I know my condition and my stay at Hotel Hope are temporary, but the uncertainty about recovery and release time frames are . . . a bore.

Wednesday, January 9, 2008

The Numbers and a PC (pre-Chipmunk) photo

Complete Blood Count (CBC) Results
(Numbers in parentheses are normal ranges.)

Day 42, Thursday, December 27, 2007

WBC 4.3 (4.0-11)
RBC 2.54 (3.8-5.2)
HGB 8.6 (11.5-15.5)
PLT 47 (150-350)

Day 48, Wednesday, January 2, 2008
WBC 3.2 (4.0-11)
RBC 2.56 (3.8-5.2)
HGB 9.0 (11.5-15.5)
PLT 51 (150-350)

Day 55, Wednesday, January 9, 2008
WBC 0.7 (4.0-11)
RBC 2.44 (3.8-5.2)
HGB 8.2 (11.5-15.5)
PLT 37 (150-350)

As you can see, the numbers were still going up on my last out-patient appointment on January 2. We wrote off the slight drop in WBCs to what I assumed was a "slight cold."

Since then, all of the numbers have dropped. I've received two red blood transfusions since Sunday. The plunge in WBCs is causing some head scratching and further investigation, but I'll be starting Neupogen injections this afternoon to boost production.

I'm feeling more like myself today with my bed set up like a little office. The laptop is in the middle, the hospital phone to my right (for local phone calls) and the cell phone to my left (for non-626 calls). I'm sitting by to take your calls on my cell phone (626 319 5737) or CoH direct line (626 359 8111).

My infectious disease doctor just showed me how to use the photo booth feature on my computer. Here I am with my latest fashion accessories - the stylish beret created by Lisa CK and my breathing tube. My cheeks have not yet reached chimpmunk proportions. Don't I look breath taking? Well, truth be told, I'd rather look breath giving these days.

And, since I'm in a photo booth, I'm obligated to take at least one mugging-for-the-camera shot. Or could this be a pathetic display of inappropriate happiness? (Note to self: must professionally whiten teeth this year.)

Inappropriate Happiness

Can happiness ever be "inappropriate"? I'm hoping to find out.

The pieces of the puzzle are coming together, and it appears that I may not have pneumonia (although I still have "pulmonary infiltrates"). Instead, it looks like I have the reversible lung damage that's a side effect of bleomycin, one of the pre-transplant chemo drugs I took two months ago.

Doctors are gradually taking me off the antibiotics and replacing them with the cheek-puffing steroid Prednisone. I had my first dose last night, and I already feel significantly better this morning. If all goes well, I'll be able to go home this weekend and take the drug in pill form.

I haven't had a fever for 36 hours, and my cough is calming. That's the good news. The bad news is that taking a shower last evening still left me huffing and puffing as if I'd just run the OC Marathon. And I'm in the process of receiving a red blood transfusion to pump up my low RBC and hemoglobin counts.

It's nice to know that the culprit is likely bleomycin and not a person, place or thing that sent me back to Hotel Hope. Those infectious disease specialists grilled me like I was a perp on Dragnet and then incorrectly assumed that a memorial service I attended a week and a half ago was the source. But, ya' know, I wouldn't have missed that service for anything, so it doesn't matter.

Many of us are carrying inappropriate guilt. I've had phone calls from friends worried about a suspicious outing ("I should never have taken you to Costco") or party ("Do you think you should have been around that many people?") or homemade meal ("I carefully washed all the vegetables with water and vinegar"). I've personally wrung my hands about sloppiness with hand-washing and fretted about close contact with small children.

Not that I should stop being vigilant, but it's a lot more fun to throw darts at bleomycin than an over-active schedule and under-active hand washing.

I've been researching all of the possible side effects of prednisone. Besides the image-enhancing chipmunk cheeks, swollen belly and increase in appetite, one site warned about "inappropriate happiness." That, of course, brings to mind the photos of a smiling and laughing Britney as she's taken from her home and small children in an ambulance.

Now that I've taken a second to erase that haunting Britney image from my brain, I personally wouldn't mind a little inappropriate happiness, especially if that means happiness in the face of everything going wrong.

Tuesday, January 8, 2008

Tests and Rest

I was a busy patient yesterday as doctors tried to diagnose the root cause of my pneumonia. In addition to my regular visit with Dr. Forman, I met with a pulmonologist and two infectious disease specialists. I had another chest X-ray, a CT scan and a diagnostic bronchoscopy.

When I wasn't testing or talking, I was sleeping. I cat-napped between procedures and then went down for a 2.5 hour snooze until George visited at 8:30 pm. I woke up feeling fatigued and fiery hot, and soon found out that I had a 103 degree fever.

Apparently, I'm still not on that "magical" antibiotic bullet and doctors admit we're still in a "let's try everything and hope that one will be the right one" approach.

Dr. Forman also introduced the possibility that bleomycin, one of the chemo drugs I took before the stem cell transplant, has downsized my lung capacity. The side effects usually rear their ugly head about two months after administration.

I first read about the possibility of lung damage last year on the blog of Jenna, another one of Dr. Forman's auto stem cell transplant patients. The treatment is Prendisone, a powerful steroid that restores lung capacity while temporarily puffing up the face and belly and giving me the ability to hit one out of the ball park. Naturally, when Dr. Forman brought up Prendisone, I winced, but puffiness beats breathlessness.

The bleomycin effect could also explain the other symptoms, such as high temps, low blood pressure and dipping blood counts.

I'm hoping that we'll have most of the answers by tomorrow.

Monday, January 7, 2008


I just saw Dr. Forman and found out that my Sunday morning X-ray revealed that I have the dreaded double pneumonia - a not uncommon result of a bacterial or viral infection.

This certainly explains my breathing difficulties and fatigue. I discovered yesterday that I started wheezing and gasping for air if I laid flat and on my side. So I slept last night with my head elevated while lying on my back.

I'm so glad I called the ETC on Saturday.

Sunday, January 6, 2008

Back at Hotel Hope

When I talked to Celia, the nurse on duty at CoH's ETC, on Saturday, I was surprised when she told me to come in immediately. "No, no," I protested. "I was just in last night. I only phoned because my discharge instructions say to to call if my temp rises above 100.5. I just took two Tylenol so my temp will go down within the hour. I don't need to come in."

Celia still insisted. "Couldn't you please talk to the doctor on call to find out if this is really necessary?" I persisted. She spoke with the nurse practitioner and they both screamed out for me to get my butt to the ETC STAT. (Well, they didn't really say "butt," but they were SERIOUS.)

I apologized to George for having to chauffeur me once again to the ETC, but figured I'd be in and out in an hour. As it turned out, the fever was the least of my problems. My blood pressure (when standing) was as low as 65/40. Celia told me that these kind of numbers can land you in the ICU. My hemoglobin had plummeted to 7.5, from 9.0 on Wednesday. (This is the lowest that it's ever been.) I gave Celia (or "Mean Celia" as I teasingly call her) permission to gloat over her insistence that I come in ASAP.

I'm still experiencing shortness of breath, in spite of the red blood transfusion that raised my hemoglobin above 9. Standing up and taking three steps in my room leaves me gasping for air. The chest X-rays have been clean, but I've been scheduled for a CT scan on Monday. I'm also expecting a visit from the pulmonologist today.

The blood culture determined that I do have a bacterial, not a viral, infection. I'm now on the magic antibiotic that should get me back on the right track.

Like I said yesterday, I thought I was super-human, but the nurses tell me that this is what happens when post-transplant patients (even autos) catch a bug. Our bodies just don't have the natural defenses to fight it, resulting in higher temps, lower blood pressure, plummeting blood counts and hospital stays.

The good news is that there's been a reason for my shortness of breath - not that I was simply becoming a wimp as I'd feared.

Saturday, January 5, 2008

ETC (etcetera, etcetera, etcetera)

ETC is short for "etcetera" (and so on) and "Emergency Treatment Center" at the City of Hope. They both apply to this post.

I've been feeling like a big wimp all week while I've nursed a mild cold. But, since I've been instructed to call the ETC if my temperature rises above 100.5 degrees, I sounded the alarm last night when my fever spiked at 102 degrees. I was hoping that they would say, "Take two Tylenol and call us in the morning," but the fever, combined with other symptoms, prompted the nurse and doctor on call to instruct me to report immediately to the ETC. Never mind that it was 11 pm, and the rain was coming down in buckets.

By the time Geoge and I arrived, the Tylenol had kicked in and my temperature was near normal, but my blood pressure was abnormally low (95/40). I had a chest x-ray (normal), complete blood count test (below normal, but not significantly lower than my test results from Wednesday), blood culture test and urine test. I also received several bags of hydration and a couple bags of antibiotics, just in case the infection is bacterial, not viral. We drove back home at 2:30 am, when the rain was coming down in tea-cups, not buckets.

It takes 24 to 48 hours to find out the results of the blood culture test, but I'm feeling much better today - just lacking energy, ambition, appetite, etc. This little experience is a good reminder that I'm not super human and must continue to be vigilant in drinking fluids like a camel, washing hands like an OCD patient, and so on and so forth!

4:oo pm Update: I just called the ETC to let them know I had a temperature of 101, and they said to come in STAT. RATS!

Thursday, January 3, 2008

The "Big O"

No . . . not that "O."

I've developed some strong opinions about the Obama-endorsing, Spanx-wearing, Color Purple-producing queen of daytime TV, Miss Oprah Winfrey. As a matter of fact, I have a thing or two to say about all three of daytime's reigning royalty - Martha, Oprah and Ellen.

You see, over the last year, I've logged countless hours viewing and analyzing this trio. During Hyper CVAD stays at Hotel Hope, you could find me glued to Martha at 10 am, Oprah at 3 pm, followed by Ellen at 4. The habit would continue for a few days after I returned home. (I could always tell how good I was feeling by how much daytime TV I was ingesting.) I was a captive audience during my three stints at harvesting stem cells at City of Hope and then again during my stem cell transplant.

For the record, I never gave these programs my full attention. I watched while blogging, surfing the web, chatting on the phone or reading. And I never devolved into the type of passive viewer who runs out and buys the latest must-have luxury item from the "O" list. Oh, no, I generated, not lost, brain cells because I was a critical viewer. (Or at least that's what I told myself.)

Martha Stewart: Who doesn't love to hate the ultimate domestic doyenne? And who hasn't fantasized about slinging a soufflé at the woman whose name has become synonymous with detail-oriented perfection, gracious living and the relentless pursuit of pretension?

So why can't I get enough of her? I think it's because she knows she's a perfectionistic, condescending know-it-all, whether she's doing a segment with super-chef Mario Batali or former president Bill Clinton.

To her credit, she's improved dramatically from season one. I haven't witnessed a single one of those annoying, "What was it like to work with (insert name of famous co-star)?" questions. Interviewers who ask this question should have the earth open up and immediately swallow them. Or, at the very least, have a souffle slammed in their faces.

And Martha seems to be cutting back on the "it's all about me" moments that plagued her earlier shows. I'll never forget season one's segment with actress Rashida Jones (of The Office), daughter of Quincy Jones and Mod Squad's Peggy Lipton. Martha just had to tell the world, "Oh, I just adore your father. You know I gave him a fantastic birthday party on my fantastic yacht near the fantastic island of St. Bart's."

I don't envy the yacht or the island hopping, but, I admit, I do turn a little green over her hair (when I had a head of my own, I frequently brought Martha's head shot to my hair dresser), her Hermes Birkin bag, her blue-egg-laying chickens, her baby donkeys, her vision and her ability to bounce back after stock plunges, prison sentences and dismal ratings on The Apprentice. (I know a thing or two about bouncing back.)

Ellen DeGeneres:
I love this woman, and she can do no wrong.

Oprah Winfrey:
Without a doubt, she's one of the most influential women on the planet with the ability to turn obscure book-titles into best sellers and fledgling mompreneurs into multi-million-dollar success stories.

She's at her best when she leans in and drawls, "Girl-friend," and then dishes about pesky panty lines, dieting dilemmas or an affinity for pomegranate martinis. After all, she's one of us, but, unlike us, she can demonstrate how to smooth those lines, tackle those dieting snafus or whip up the perfect batch of pominis. And, in the process, someone's bound to become a millionaire.

She's at her worst during the "tough" interviews. I squirmed when she tried (unsuccessfully) to get reclusive Cormac McCarthy, author of Oprah Book Club selection "The Road," to open up about his life and work. I shifted uncomfortably during her awkward interview with actor/director Sean Penn.

But the worst moment came during the "Live Your Best Life" segment at Miraval Resort and Spa in Tucson, Arizona. 60 lucky women (out of 50,000 entries) were selected for the life-altering, four-night stay at the luxury resort. The retreat was designed to "help each contest winner make lasting transformations for a more balanced, mindful, joyous, healthy, fulfilling life." That meant emotional and physical work were as important as poolside pampering.

During the "swing and a prayer" recreational therapy exercise, Oprah's best buddy Gayle confessed that "fear" was keeping her from letting go. This fear became fodder for Oprah's joy. She taunted teased and berated Gayle until she "let go" on the high-flying swing. And what did Gayle take away from this exercise? “That was very frightening to me and I’ll never do that again," she announced with terror. Trust me: This was not the desired response, but it was all hilarious to Oprah.

Now here's what I don't understand. George and I have participated in dozens of recreational therapy exercises with other families. We had fun, but the number one rule was always SAFETY - both physical and emotional. Why did the Miraval therapist allow Oprah to create an unsafe atmosphere? If any of us parents had engaged in that same Oprah-like taunting, we would have been gently reprimanded. Did it occur to Oprah that taking pleasure from someone else's pain could be creating an unsafe environment for the 60 other guests?

Since that stellar television moment, I've stopped tuning in to Oprah at 3 pm. And as my blood counts and energy rise and my calendar fills up, I'm no longer in the market for daytime TV. As Martha would say, that's a good thing.

Wednesday, January 2, 2008

What Would Susan Eat? (EXTENSION)

By popular demand, I have extended the "What Would Susan Eat" contest until Tuesday, January 8.

Southern California winners will receive a jar of Duke's Mayo. If you live in a state that sells Duke's, you'll receive a food product that's not available in your neck of the woods.