Sunday, August 31, 2008

Returning to Normal


I suspect that many Cancer Banter readers may have rolled their eyes (I saw that) after my last post, The Healing Power of Pecan Sticky Buns. Yes, I admit that I was so encouraged by my sudden progress that I figured I'd be my old self before McCain's acceptance speech at the Republican National Convention.

But reality set in over the weekend. After I wrote Paula that my recovery back to normal was going to be slow, she cautioned: "Please print this [my declaration of slow recovery] out and tape it to your bathroom mirror! I KNOW you--you'll start feeling peppy and decide you want a pool in the back yard and you'll just start DIGGING." She knows me too well.

Even though I continue to do just a bit more each day, I'm discovering that I still have serious limitations. I puttered in the kitchen for 30 minutes this morning - nothing more exerting than cubing a watermelon and loading the dish washer - but I was left breathless and tired.

Four friends came by with a beautiful brunch feast at 10 am. We had homemade lemon pound cake, chocolate brownies and fresh fruit galore (strawberries, blackberries, blueberries, bananas, watermelon, grapes), all washed down with freshly brewed strawberry-kiwi black tea. Most of the guests ate their fruit with yogurt, but I squirted loads of high-fat whipped cream on mine. I'm counting calories, ya' know.

I was having a delightful time, but after one hour, I was worn out. I had to excuse myself so that I could rest, but I encouraged the party to continue. I came down a little later to say goodbye to my friends and to show off the latest upgrades to the shade garden.


Our shade garden, beneath the redwood trees in the side yard, is a
refreshing retreat during the Dog Days of August. (Click to enarge.)

I was hoping that I would feel good enough today to make a brief appearance at a friend's house warming party. Scratch. I was thinking I might feel good enough to show up at a friend's Labor Day barbecue. Scratch.

The puttering and the small gathering were enough for me. I was content to spend the rest of the day with my LA Times (although the Sunday edition has become dismal), NY Times and take-out fried chicken, greens, mac and cheese and corn bread from Roscoe's House of Chicken and Waffles. The day was far from "normal," but it was good.

Friday, August 29, 2008

The Healing Power of Pecan Sticky Buns

I woke up this morning feeling better. Not just a little better, but a lot better, as in, "Ooh, I get to bake the Trader Joe's pecan sticky buns that were rising overnight." Better as in, "Yum, that was a tasty 390 calorie treat, but I think I need another one."Better as in, "Hey, the thought of going up and down the stairs does not intimidate me."

I've consumed my 900 calorie breakfast and taken my meds and fed and watered the animals and I'm ready to hop into the shower. What a lark! What a plunge! (I've been rereading Mrs. Dalloway.)

Up until now, I think I was lying when I said I felt a "little better." I was just so damn tired of sounding like a negative Nellie and I wanted to believe that I was improving, but I had no evidence of that. Saying I felt a "little better" satisfied the questioner and, I hoped, would convince my body that I really was getting better.

The astute Dr. Forman picked up on this yesterday. I had told the nursing staff that I felt a "little better," and he was excited by this report. But when he saw me, he said, "Define 'feeling better.'" Busted. The only thing I could come up with was that my cough has improved.

But today I am not delusional. I am feeling better* and I am jubilant. I may even go downstairs for another one of those pecan sticky buns.

(*More energetic, less shortness of breath, no dizziness)

Thursday, August 28, 2008

Thank You, Friends

I have been so touched and moved to tears by all of the comments I received after my last post, "Sicko." Thank you for embracing me and holding me up. My Colorado friend Ellen also wrote a beautiful response, but she wasn't able to post it and called to read it to me. I was moved to tears again.

I've made some decisions in regard to making my life a little easier. My most challenging time is the morning. I have a dog and cats that need to be fed. I need to make sure that I eat breakfast so that I don't take my 9 pills on an empty stomach. These tasks can be overwhelming for me. Alas, I cannot depend on the teen in the morning because of her late sleeping habits.

I decided to hire someone to come by our house in the morning on her way to work. She'll pick up the newspapers, feed and water the animals, make and serve breakfast and tea and make sure I have a pitcher of fresh water. I let my cleaning lady do these things for me yesterday (I usually refuse personal assistance), and it was a great relief.

When I went out to the City of Hope today, my goal was to be wheel chair free. I had it all plotted out in my mind how I would do it. But on the way to my blood draw, I had one of my dizzy spells. Luckily, my friend Mary was nearby, and I latched onto her.

A nurse came by with a wheel chair and announced to me, "You'll need to use this today." So much for being ambulatory.

Dr. Forman and I discussed the dizziness and fainting spells and how they have increased in intensity and frequency. Could it be related to low blood pressure? I now have a prescription to raise blood pressure. Could it be heart related? I have an appointment with a City of Hope cardiologist. I'm relieved to be seeing the cardiologist. I've been corresponding with a few people with eosinophillic illnesses, and they all have advised me to get an EKG because the EOS often infiltrate to the heart.

Yes, I need to raise my blood pressure. I need to gain weight. It's as though I live in the backward land of Bizarro. Let's see . . . maybe I should raise my cholesterol too. Perhaps I should take up smoking while I'm at it.

Wednesday, August 27, 2008

Sicko

Last year, while going through Hyper CVAD and an auto stem cell transplant, I discovered that I'm stronger than I thought.

This year, while battling my mystery illnesses, I'm discovering that I'm weaker than I thought.

Seeing myself as strong and resilient was a big part of my image during chemo treatment. My goal was to keep the pep in my step and to never look or act like a "sick" person, regardless of how I felt. I was able to throw a baby shower for my god baby on a Saturday afternoon and then drive myself to the evaluation and treatment center at CoH for bloodwork. I found out that my hemoglobin had hit an all-time low of 7.6 (12 is low normal). Who knew? Certainly not me. So I spent my Saturday night getting a transfusion while the staff played disco tunes from the 70's. Memorable evening!

As strange as this may sound, I especially didn't like my doctors and nursing staff to see me as "sick." The nursing staff often joked, "Is she a patient or visitor?" because I always wore comfortable but stylish yoga-inspired clothes, not hospital gowns or pajamas during my stays at Hotel Hope. God forbid that I should look like a patient. I loved it when Dr. Forman said things like, "I thought you would look sick as a result of (fill in the blank), but you don't."

But all of that has changed. A couple weeks ago Dr. Forman saw me for the first time being transported in a wheel chair. I was mortified and half jokingly hid my face from him.

Last week my friend Karen brought me out to the City of Hope. I walked on my own steam to the clinic exam room and then asked one of the staff to let Karen know where I was. She and the nurse came in with the wheel chair. I asked the nurse to please remove the incriminating device, but she explained that they used it to carry Karen's bags. I did not want Dr. Forman to think that I had to be wheeled into the exam room. Finally, I said to Karen, "Please, you have to get that out of here. It's very distressing for me." I look at it as a mocking symbol of my weakness.

Now when I say that I don't want my doctors to view me as "sick," I mean that I don't want to LOOK sick. I think I've been very good at communicating all of my symptoms, but I do it in a clinical way, as though I'm talking about someone else. But with my stick-thin frame and low energy level, I'm not fooling anyone. I no longer look like a "well" person.

After I recovered from my lung damage in January, I felt invincible. After nearly a year of treatment and a successful remission, I felt I could do anything. I pushed myself physically, professionally and personally. I took risks. I was not afraid of failure. I decided to start my own marketing consulting business. I made a life-changing personal decision about a relationship. I pole danced in front of 300 people.

All of that suddenly changed in July, at the onset of this illness. Now I'm plotting how to get up and go to the bathroom without passing out.

I know that there must be a lesson in all of this somewhere for me. I just don't know what it is.

To Walk or Not to Walk

I do believe that my lungs are improving. The progress is slow, but it's there.

I am still so far away from being a fully functioning human being. I still have to elaborately plot out trips to the bathroom to avoid a blackout spell. I'm still out of breath after a flight of stairs. Even pleasurable activities, like going for a mani-pedi with a friend, tire me out.

With that being said, I'm looking at my September calendar and trying to figure out which engagements to keep and which to strike. The most important date is September 14, the night of the Leukemia & Lymphoma Society's Light the Night Walk. That's a little more than two weeks away. Will I be up to an action-packed evening that culminates in a 2.8 mile walk? Ordinarily, that would be nothing, but I haven't walked for more than 200 paces without a break for the last month.

I should be in high recruitment mode, trying to build up my team of walkers, but now I don't know what to do. I don't know whether to forge ahead under the assumption that I will have bounced back completely by then, or just say, "I raised $550 and that will have to be good enough." Maybe I should see how I feel in one week. Maybe I should recruit walkers with the caveat that I may not be there.

I would really appreciate your thoughts on this.

Tuesday, August 26, 2008

Ironic Death

Dave Freeman, author of 100 Things to Do Before You Die, didn't get to complete his bucket list before kicking the bucket. At age 47, he died as the result of a fall and head injury.

He had only completed half of his list.

(For my take on the "Before You Die" publishing mania and my quest for the perfect purse, click here.)

Monday, August 25, 2008

I need fat!

I frightened myself tonight. After emerging from the shower, I caught a glimpse of my naked body in the mirror. I wasn't prepared for what I saw - a skeleton with skin.

Yes, I continue to lose weight, in spite of my attempts to consume at least 2,500 calories a day.

I have at least two ideas to put on pounds fast:

Go back to college: Is it true what they say about the "freshman fifteen"? I went from 115 to 135 in my first two months at a small Southern college. Biscuits and gravy. Grits and gravy. Gravy with gravy. Fried gravy. And lots of butter on homemade rolls fresh from the oven. I couldn't get enough.

Eat, Pray, Love: Author Elizabeth Gilbert gained 23 pounds while eating her way through Italy. I can't think of a lovelier way to fatten up.

Sunday, August 24, 2008

One in a Million

I've been mulling over conversations I had with my pulmonologist (Dr. Horak) and hematologist (Dr. Forman) last Thursday.

Dr. Horak used the term "eosinophillic pneumonia" to describe my condition. It is an extremely rare form of pneumonia that, according to one website, strikes .1 in 100,000. That's one in a million. This condition usually responds quickly (within a week) to Prednisone. But I've been on high-dose Prednisone for 20 days now without lung improvement.

When I met with Dr. Forman, he also talked about the eosinophils, but added that they suspected something else was going on simultaneously. "So we're looking at possibly two very rare things going on with you."

All I could think was, "Which rare thing?" I'm in remission from my "rare"cancer, Mantle Cell Lymphoma. I had to stop treatment for my "rare" skin disorder, Cutis Laxa. (The Minocyclin may still be a suspect.) Now, you mean to tell me I have two more rare things to contend with?

I was elated to be feeling a "little better" on Friday and hoped that this would be a trend, but it hasn't continued. The dizziness is becoming a problem again. Yesterday, I blacked out and found myself lying on the hard ceramic tile in the bathroom. I bruised a leg, scratched an arm and bumped a noggin on the way down.

I'll be back at the City of Hope on Thursday, and we'll have the lab results from a lot of blood tests and we'll see if my lungs are improving.

Friday, August 22, 2008

Ding Dong

Dare I say it? I think the new drugs are working. I think I may have turned the corner today.

I can tell because I didn't break into a cold sweat when the doorbell rang this afternoon. I didn't panic at the thought of going down the stairs and then up the stairs. And I didn't ignore it. I went downstairs, answered the door and turned down a magazine subscription. And then I walked back upstairs. Without collapsing.

What's more, the overwhelming sense of exhaustion seems to be slipping away. I'm slowly getting better!

(PS What does a hematologist order at a bar? A Bloody Mary, of course.)

When Breathing is a Competitive Sport

In August 2007, while athletes worldwide prepared for the 2008 Olympics, I was engaged in a little personal competition at the City of Hope.

In order to qualify for the Auto Stem Cell Transplant, I had to prove, among other things, that my lungs were in good shape. So off I went for pulmonary testing. The technician clamped a clothes pin on my nose so that I was forced to breathe through my mouth. Then I got to curl my lips around a hose and follow a breathing obstacle course. ("Now inhale. Now blow out all the air. Keep going.") The results are calibrated and analyzed by computer so that the patient receives immediate feedback.

Last year, I was the pulmonary equivalent of Michael Phelps, going for gold in all eight breathing events.

Yesterday, I took the test again. I had to drop out of one of the breathing events because it was too exhausting. And I didn't make the team in any other category. My lungs suck.

But not to worry. My favorite Olympic stories star the "comeback kid," and I'm sure to be one of them.

Thursday, August 21, 2008

The Trio

A pulmonologist, a hematologist and an infectious disease specialist walk into a bar.

I don't know why I find that set-up funny. I guess it's because I get a kick out of the title "infectious disease specialist," which sounds like something from a Michael Crichton novel. Very ominous.

Or maybe my funny bone is tickled at the thought of seeing my docs out of context. I'm picturing myself sipping a Manhattan at Smitty's. Suddenly, Dr. Horak (pulmonologist in scrubs and Crocs), Dr. Forman (hematologist in chinos and button-downs) and Dr. Dadwal (infectious disease specialist in pristine white lab coat) belly up to the bar together.

(I've never seen one of my doctors in a bar, but I did once run into my gynecologist at Burger Continental, a Middle Eastern restaurant in Pasadena. It was very awkward for both of us because we were embarrassed to be discovered eating in such a mediocre establishment.)

The problem is that I don't have a punch line. And the doctors, three of the best in their fields, still don't have an explanation. They have a lot of "suspicions," but nothing is conclusive.

Sometimes I think I just need to push myself a little harder. At other times, I think I'm trying too hard. But it doesn't seem to matter how much sleep or rest I get; I feel an overwhelming, crippling exhaustion.

And there's nothing funny about that.

(If you have a punch line, I'd love to hear it.)

Monday, August 18, 2008

It's not my imagination

Silly me. I thought that my appointments at the City of Hope were today. Mary escorted me to my first appointment for a chest x-ray, and I found out that I'm scheduled for Thursday. Oh.

I was especially eager to see a doctor today because I woke up with a slight temperature that slowly rose to 101. Dr. Forman had already told me that I should not be experiencing any kind of temperature spikes while on the Prednisone.

I called Barb, Dr. Forman's nurse practitioner, and she whisked me away to the ETC (evaluation treatment center). During my seven-hour stay, they made arrangements for another chest x-ray, a chest CT scan, lots of blood work and a meeting with the infectious disease specialist.

I learned that my lungs look worse than they did after the last CT scan two weeks ago. I didn't think I was improving and feared that I was getting worse. Now at least I know that it wasn't just my imagination.

I left with several new prescriptions, along with a much more aggressive, 3x day dose of Bactrim (instead of twice a week). Let's hope this does the trick.

Sunday, August 17, 2008

Lazy Susan


I admit it.

I Google myself. When you're a writer and a blogger and a bit of a busy-body, it's fun to see what's out there.

A couple weeks ago, if you did a Google image search on my name, a head shot from my former employer would pop up first, followed closely by shots of me at a clothing swap party and a Media Bistro party. (Yea, I'm the original par-tay girl.)

Now I've been upstaged by a "lazy Susan Carrier," a crafty accessory for those spinning table tops popular in familly-style Chinese restaurants.

It's ironic because I consider lazy to be one of the world's worst pejoratives. Clean it up a little and call it indolent, and it's still an ugly little adjective. I always feel a little sorry for some cancers, such as Chronic Lymphocytic Leukemia, that are branded as indolent. Cancer is a nasty thing, but do we really need to insult it too?

But now my name and lazy are number one on Google, during a time when my energy is low and my spunk is in a funk. Talk about a low blow!

I'm looking forward to reverting back to the opposite of indolent: active, busy, diligent, energetic, enthusiastic, hard-working, industrious, intent. Put that on your lazy susan and spin it!

Thursday, August 14, 2008

The Michael Phelps Diet

I think I have a new role model.

Phelps consumes 12,000 calories a day to keep from losing weight from his 30-hour-a-week workouts. (Click here for a look at a typical day at the table with Phelps.)

Pretty amazing when you consider it takes 3,500 calories to gain a pound or lose a pound. I could skip the workout and pack on those 22 coveted pounds in a little more than a week on the Michael Phelps diet.

Now I just need to figure out how to get his six-pack.

How low can you go?

For me, that number would be 108 pounds on a 5'10" skeletal frame. As predicted, the Prednisone is burning calories faster than I can suck them down in a chocolate milkshake a day or wolf them down in the form of 12" Philly cheese-steak sandwiches from Fredo's.

A BMI (body mass index) of under 18.5 is considered underweight; mine is now 15.5. My size 2 tall Abercrombie jeans hang on me like gangsta' pants. I have 22 pounds to gain before I reach my goal weight of a lean 130 pounds. That goal is especially daunting when I keep slipping backwards on the scales.

Dizziness continues to torment me. I ate a hearty breakfast and drank lots of water before my appointments at City of Hope this morning. I continued hydrating while waiting for appointments and was careful to rise slowly, but nothing seemed to help.

Dr. Forman asked if I would be OK walking back to my car from the clinic. I assured him that I traveled from resting bench to resting bench and felt confident I was up to the task. But I wasn't. I scheduled my appointments for next week and then walked slowly to my first rest stop, an overstuffed chair by the elevator. PLOP! There I sat for 45 minutes, feeling overwhelmed and exhausted. "You can do this," I coached myself. At last, I rose slowly, felt woozy and sank back down again.

Ten minutes later, I gave it another shot. I took a few steps and, as luck would have it, my new friends from Lancaster passed by and greeted me just in time. I latched on to the mom to keep from buckling down. Another kind woman observing the scene made arrangements for wheelchair service.

Today's chest x-rays did not show improvement, but my eosinophils are back down to normal, thanks to the Prednisone. That's a good thing. I'm so desperate to feel like myself again.

Wednesday, August 13, 2008

A BIG Date

Yes, I've dumped the date book, but I do have at least one special event on my calendar for September. Piper Robert and his Bonnie lass will be getting married at our home in a small ceremony on September 20.

They're doing all of the planning remotely from West Virginia with the help of a Pasadena friend. I'm told that all I have to do is show up.

I think I can manage that.

Tuesday, August 12, 2008

Make it and break it

I'm no heart breaker, but I am a date breaker.

The last few weeks have been a whirlwind of making dates and breaking dates. I plan optimistically, then cancel regretfully.

The solution? I'm temporarily ditching my date book because I never know from hour-to-hour, day-to-day how I'm going to feel. Who knew that battling eosinophils could be more challenging than main-lining toxic chemicals during cancer treatment?

My only big plan is to get well soon. And that's a date I can't afford to break.

Monday, August 11, 2008

Then and Now

Things I never did last year at City of Hope:
- Valet park the car
- Take the shuttle bus
- Hitch a ride with a friend (except for after treatments requiring sedatives)
- Request a wheel chair

This year, I'm resorting to all of the above. What gives?

Saturday, August 9, 2008

Help! There's a Chihuahua in my kitchen.


Cynthia caught me at a weak moment yesterday, which wasn't difficult since my day was a series of weak moments.

You know that it's not going to end well when the conversation begins, "Mom. [delivered with staccato urgency] I have something to tell you, but you need to promise not to yell at me."

Of course, this line guarantees that she is going to drop a bomb so explosive that hootin' and hollerin' is the only recourse. I could feel my blood pressure rising already, but I said, "What, honey?"

"OK. Here's the story. My friend is living in an apartment. She has a dog, but she's not allowed to keep it there any more. I told her that we could take care of the dog until she finds a new home for it."

Her friend is the daughter of my friend, who I took under my wing a decade ago. The family lives in King's Villages in Pasadena (aka the projects).

In my weakened state, I looked up and said, "And this would be temporary until we can find it a permanent home?" Who was I to deny my 19-year-old daughter the joys of animal rescue and lending a helping hand?

"Yes, Mommy," she agreed.

This whole scenario reminds me of when Cynthia was a candy-cravin' pre-schooler.

"Mommy, can I eat a piece of candy?" she'd ask.

"No, munchkin, you may not eat a piece of candy," I'd respond.

"Then, Mommy, can I just HOLD a piece of candy?"

Did I look like I had "FOOL" written across my forehead? (Don't answer that rhetorical question.)

But my daughter's never been a fool (irresponsible, yes but fool, no). Now the "candy," a Chihuahua named Brownie, is "in her hands." We just need to get him out of her sticky little fingers before he ends up a permanent part of her digestive system.

(Barbara R.: This one's for you!)

Friday, August 8, 2008

What's goin' on?

I know my post from yesterday talked about everything except the thing most readers wanted to know: What did Dr. Forman have to say?

The biopsy definitely showed that there are eosinophils (EOS) in the lung tissue. We are going to go ahead and continue with the fairly high dose of 60 mg of Prednisone daily because that will take care of both the EOS in the blood and the infiltrates in the lungs. We'll eventually taper off and then hope that the EOS does not rear its ugly head again.

I was looking forward to a fun and interesting day today, but, instead, I have spent most of the day sleeping in five-minute increments or throwing up. I write for five minutes, then sleep for five minutes. Sometimes I throw up in between. Dr Forman has called in a prescription for the nausea and throwing up.

Of course, I have no time for this. I'm throwing a summer harvest garden party on Sunday for about 25 people from my produce-sharing group. I'm writing a first-person piece about the group for the LA Times Home section, and an LA Times photographer will be at the party on Sunday.

Shouldn't I be outside resodding the lawn or something? Instead, my five minutes of awake time are nearly over, and I'm ready for another five-minute nap.

Thursday, August 7, 2008

Ready or not, here I come!

Those incremental baby steps are adding up to some long strides.

Let me compare my day on Monday, pre-steroids, to my day today.

Monday (Times approximate):
11:30 am Janet comes to pick me up for my appointments. I've just emerged from the shower and I'm languishing on the bed in my bathrobe. Getting dressed seems like a monumental task. I slowly dress, carefully selecting a pair of black Lucy yoga pants covered in cat hair. We leave 15 minutes later.

12:10 pm Janet drops me off while she parks the car. I'm happy to see that there's no line for check-in.

12:30 pm I walk a few feet to have my blood drawn and feel exhausted.

12:40 pm Janet and I wait together for the shuttle that will take us to Helford Hospital for an x-ray.

1:00 pm I slowly change into a robe and have an x-ray taken. Breathing in and holding my breath is difficult.

1:10 pm We ask for a wheel chair and Janet pushes me to my clinic appointment with Dr. Forman. I hope that I don't see anyone I know.

1:30 pm The nurse assistant takes my vitals. I ask the nurses if it's OK to sit in the room for a few more minutes because the thought of walking back to the waiting room is too challenging.
I'm quickly called in to see Dr. Forman.

1: 45 pm Janet handles the scheduling of my next appointment while I rest in a chair.

2:00 pm Janet wheels me back to the car.

When we're back in Altadena, Janet runs errands for me while I wait in the car. I cannot wait to go home and take a nap.

Today, Thursday:
8:00 am I shower and dress and I'm careful to select something that doesn't make me look like a Persian cat.

11:50 am: I drive to my appointment, park in the regular parking lot and walk to the check-in desk. I only need to take one breathing break on the way.

12:20 pm The check-in desk is so busy that they're using the number system. I feel like I'm waiting for a knish. I pass the time by trading knock-knock jokes with a nine-year old boy. (Knock, knock. Who's there? Red. Red who? Ready or not, here I come.)

I also talk with a woman from Bishop (five hours away) who's there with her young adult son. The only remnant of his brain tumor is a jagged, four-inch scar on the back of his head. He beat cancer eight years ago, but fell victim to a stroke (unrelated) six years later. The remnants of that episode are more obvious - diminished cognitive abilities, loss of most expressive communication and physical limitations on one side of his body. But he's a happy young man who insists I take one of his three packs of Rollos. I take just one from the package.

1:30 pm I'm finally called for my blood draw.

1:40 pm Because of the long waits for check-in and blood draw, I'm late for my x-ray appointment. I decide that it will be faster to walk than wait for the sometimes unreliable shuttle. I stop at every possible bench on the way. During one of my bench stops, I run into a delightful lady from Hawaii. We met several weeks ago in the CT scan waiting room. She and her husband will live at Hope Village after he's discharged from his auto stem cell transplant. Until then, she's living in her husband's hospital room. We make a date for lunch next week.

2:00 pm Several bench breaks later, I arrive for my appointment. Reuben (the Rollo man) and his mom have taken the shuttle and arrive ten minutes after me.

2:30 pm I walk back to the clinic for my appointment with Dr. Forman. On the way, I again take several bench breaks. This time I see a woman I met a few weeks ago at a Lymphoma & Leukemia Society event. She is a fellow "cell mate" (MCL patient) and is now on staff at City of Hope. We make a date to have coffee together.

3:30 pm I handle my own appointment making and head back to the car. I walk about 100 steps and feel the need to slouch on a couch. Ruth, the woman I chatted with in the appointment line sees me and joins me. We have a lovely 20-minute conversation and then walk toward the parking lot together. I make it as far as the Fountain of Life and decide to take the shuttle the rest of the way. Ruth and I hug goodbye.

4:10 pm I head for home. I cannot wait to go home and do an interview for a story I'm working on.

To be honest, I think that my shortness of breath has improved just slightly, but my energy level has shot up significantly. I'm no longer exhausted after minimum exertion. On Monday, even talking sometimes felt like running a 10 k. I was withdrawn and not interested in engaging with others. (I wasn't depressed; I just had no energy.) Today, I was working the room and making lunch and coffee dates.

Gotta' love those 'roids!

Wednesday, August 6, 2008

Incremental


I was lucky enough to have a photo session with my friend and favorite photographer, Skye Moorhead, earlier this year. (Thanks to Chris at Geltz Comm.)

I arrived a little early and witnessed another woman being photograped. She looked beautiful, but she wasn't moving or changing expression while the photographer clicked away. I learned from this and made a mental note to make like a model so that all 150 pics didn't look the same.

I was ready for my close-up.

I sat down in the chair and started making large, gross changes in both my pose and expression. I'm sure the results looked goofy and unnatural. And then Skye spoke one word that changed everything. "Incremental."

I caught on immediately and started making subtle, almost imperceptible, changes in pose and expression. Nearly all 150 of my photos look great and I have a tremendous variety of poses and moods to select from. In addition to two talented photographers, a creative makeup artist and beautiful lighting, I believe a big part of the success of the shoot came from that one word, incremental.

Right now I'm trying to return to good health. Each morning I wake up mentally ready to bounce out of bed and take on the world again, but my body isn't ready. I want to make one big, sweeping move that will fix everything, but it's just not happening that way.

I am improving each day since I started the Prednisone on Monday, but the changes are gradual and incremental, not sudden and sweeping. I think Skye would approve.

Dee Dee Who?

I am feeling a bit more human today.

The fog of war with my own body is gradually lifting, and I want to feel pretty again. I've just called my favorite Pasadena salon to arrange for a mani-pedi, an upper lip threading and eyebrow waxing.

I discovered this place about five months ago while wandering off the beaten path of Old Pasadena. When I saw the sign for threading, a technique I'd read about in Nora Ephron's I Feel Bad About My Neck, I wandered in.

This place looks and feels like a high-end spa, especially when compared with the little strip-mall, whole-in-the-wall place I'd been frequenting in my Altadena neighborhood. But, in spite of the luxurious setting, the costs for services are modest. The deluxe (massage chair, foot bath) mani-pedi costs just $28 and lasts twice as long as those I received from my no-frills salon. And they'll whip those threads across my upper lip for a mere $6.00.

So now I'm a regular, rubbing elbows with the bow-head set of Pasadena. The bow-head set you ask? You may have seen them and not known what to call them. Their blonde little girls wear enormous grosgrain ribbon bows with the wingspan of a baby California condor. The mothers have an enviable amount of leisure time that they use playing golf or tennis, shopping, lunching or having mani-pedis.

Their resemblance to one another is uncanny. As I sat waiting for my turn, I eyed a tall, tanned blonde woman with her pony-tail poking out of the back of her cap. She wore a pink polo shirt, white bermuda shorts and a rockin' diamond ring.

A half-hour later, another woman in a similar uniform sat down beside me. I told her that I'd just seen her twin. except for a different color top and cap. "Was she really buff?" she asked. "Yes, as a matter of fact, she was. I was staring at her muscles," I replied.

"I know that woman," the flaxen-haired woman continued. "She was a top-seeded tennis player, but now she's into golf. Plays every day. I only have time to play two or three times a week. Our kids go to the same school."

As this is going on, the owner shouts out that Dee Dee Myers is trying to book an appointment. "No. No time for Dee Dee Myers. Her feet take too long. Almost two hours."

When bow-head mom and I sit down beside one another for foot baths, she tells me about the many moms from her children's Pasadena K-8 prep school who frequent this salon. Dee Dee Myers' name comes up again.

I'm dying to ask if it's that Dee Dee Myers - you know, the beautiful blonde woman who was a White House Press Secretary to Bill Clinton. Is she the one with the two-hour feet?

I missed my opportunity that day, but perhaps I'll find out today.

Tuesday, August 5, 2008

The Good, the Bad and the Lumpy

Prednisone is a cruel mistress.

She will likely have me on my feet and in my neglected vegetable garden in no time.

But, oh, she extracts a price.

Just for fun, I reviewed some of her possible side effects.

The "good": Inappropriate happiness

The bad: Loss of bone density

The lumpy: Changes in the way fat is spread around the body

Of course, one would have to have fat in order for that to be an issue.

One year ago today: I was whining about my aching bones.

Monday, August 4, 2008

Feel that tingle?

The tingling sensation from sitting on the pins and needles will have to continue for a couple more days.

The bronchoscopy report showed nothing conclusive - just a couple of, "Well, it could be this, but, then again, it may not be" observations. As a result, I'm on three meds - the steroids (because we know those work), a med for the "maybe it's this," and another one to ward off possible mouth sores from the steroids. Ahhh, modern medicine. It's so precise.

Sarcasm aside, I'm thrilled to be back on the steroids because I know I'll start feeling like a human being again pretty quickly.

We'll get the results from the bronchial biopsy tomorrow and that should be more informative. Will they or won't they contain eosinophils is the big question. If EOS are in the lungs, we'll have a more accurate idea of how to proceed. I'll find out when I return on Thursday.

In the meantime, I've lost another three pounds since Friday and am down to a scrawny 111. When I point this out to Dr Forman, he replies, "You're not well." The weight loss is in spite of my new "a milkshake a day" mantra.

Now that I'm back on the Prednisone, my ironic* little diet pills, I may have to up that to two milkshakes.

*99% of people puff up on Prednisone.

Sunday, August 3, 2008

The City of Blooderly Love

Quick: Name the three primary components of the blood.

If you said white blood cells, red blood cells and platelets, you've been paying attention. If not, you may need to pick up a copy of Blood for Dummies.

I'll bet most of you didn't know (and probably don't care) that the white blood cells have six major components. Here they are, along with their usual percentage composition in the WBCs:

  • Neutrophils 50 - 70%
  • Eosinophils 1 - 3%
  • Basophils .4 - 1%
  • Bands 3 - 5%
  • Monocytes 4 - 6%
  • Lymphocytes 25 - 35%
(Totals should add up to 100%.)

What I love about these names are the three "phils," or the Three Amigos of the white blood, as I like to call 'em. The "phil" comes from the Greek "philos" (not to be confused with phyllo dough) for love. It's the same root as in Philadelphia, the City of Brotherly Love.

Now, if you're still awake, let me review absolute values, a number derived by multiplying the percentage times the total WBC, which is normally between 4,500 and 10,000.

Just to give you an idea about how high my eosinophils have been, the normal absolute value is between 100 and 300. My percentage has been as high as 55% with a total WBC count of nearly 20,000. That means that my absolute value has topped 11,000, about 36 times the norm. A count of 1,500 is considered a red flag, and mine has been seven times that high.

I'm not exaggerating when I talk about my whacky eosinophils being out-of-control. Studying the Greek origins and understanding the terminology is my simple way of restoring a little order - and a little love - to my baffling counts and symptoms.

Saturday, August 2, 2008

Pickup Andropoff (The Russian Chauffer)

Here's a little hint: If a friend is having an out-patient procedure and you have a choice of dropping off or picking up that friend, select the drop-off duty.

Hospitals are funny. If they say they want you there at 1:30 pm, they mean 1:30 pm. The driver can pull up right in front of the hospital at the appointed time as Paula did (I redeemed my free ride), wave sayonara and be outta' there faster than you can say, "Pickup Andropoff."

But that doesn't mean that everything will run like clockwork after that. I was scheduled for my bronchoscopy at 2:30 pm, but, due to circumstances beyond anyone's control, I didn't get wheeled into the O.R. until 5:45 pm.

And then my vitals were slow to recover to the checkout level. After that, I threw another wrench into the schedule by wretching (watch out for that wretch wrench). That meant another x-ray and more observation.

So the estimated 4 pm time of pickup turned into 10 pm. That's just the way it goes sometimes.

Friday, August 1, 2008

Eeyore or Tigger?

For my dear friends who have called and commented and emailed because you're worried about me and my spirits (and not the kind that come in a bottle), I wanted to assure you that I'm doing fine emotionally.

I will admit that it's difficult to hit a health slump after a multi-month stretch of feeling on top of the world. But I know that this situation is temporary. It shouldn't be too much longer before we get this puzzle solved and I'm back to running around like a Gasa-Gasa Girl.

Dr. Forman asked me to send him an email reminder this weekend so that he can manually go in and check the results from the bronchoscopy. (Since another doctor is performing the procedure, he won't automatically get the results.) That way, he can possibly prescribe meds this weekend if something shows up on the scope.

So, as always, I'm in good hands at Hope, good hands at home and surrounded by a community of friends and supporters holding my hands.