Thursday, December 2, 2010

When Patient Fatigue Sets In

I'll never forget my first day as a wide-eyed freshman at a small university in South Carolina. When I learned that one of my roomies was a senior, I gushed, "Oh, it must be so sad to know that this is your last year." "Believe me," she replied. "When the time comes, you're ready."

Fast forward a few decades to a post-stem-cell-transplant visit to the City of Hope. I was slowly (and reluctantly) weaning my way from three to one visit per week. When I learned that a fellow patient was there for her annual appointment, I felt like a college freshman all over again. I couldn't imagine a stretch of 52 weeks without an appointment any more than I could imagine leaving dorm life behind.

Funny how three more years as a student and a patient changes your perspective. By the time I hit my junior year, I was plagued with student fatigue. You know the drill - when you think you're going to scream if you have to write one more paper or attend one more lecture or eat one more meal in the cafeteria.

Now I have patient fatigue, but not the kind that comes from massive doses of chemo. I'm simply tired of being a patient. If I have to take one more test or see one more specialist or endure one more procedure or . . . you get the idea.

Unlike my early days as a student or patient, I'm not as willing to do research or ask questions, and that's too bad. I'm still beating myself up over a City of Hope visit in August. My doctor and I celebrated the good news of clean, cancer-free scans and pondered the bad news of continued weight loss (I tipped the scales at 106 that day) and a host of GI problems. When it came time to discuss the results of my bone density scan, the doctor commented that my bones were thin. I didn't bother to ask the obvious follow-up question: "How thin?"

Six weeks later, I broke my hip, an event that led me to once again ask, "How thin?"

Last week I got the answer to that question with a printout of my bone density exam. "Osteosporosis" was the headline. The results indicated that I was eight times more likely to break a hip than my counterparts with normal scans.

Would this knowledge have prevented my broken hip? I doubt it. But it does make me think twice about wearing slippery socks on hardwood floors (although my accident happened with bare feet). And it does remind me that, in spite of patient fatigue, it's important to pay attention in class.

Friday, November 12, 2010

Is there a story in you?

Greetings, Cancer Banter readers! It's been a long time (thank heavens) since I've needed to post here in my role as Susan's "cancer correspondent."

With Smooky's permission, I'm posting today about a blog that may be of interest to writers who read Cancer Banter. The Rose City Sisters flash fiction blog presents short-short stories of up to 1,000 words. There's a catch: each story might have a connection to Pasadena. (In spite of our name, male writers are welcome.)

Susan took the fiction plunge last year and wrote "The Fourth Possibility," which starts:  

Miranda thought the Japanese word sounded like what it meant—hot and humid. She escaped the mushiatsui life when she moved from sultry South Carolina to Southern California, but there was no escaping the steamy, suffocating heat of Sado Island, Japan, in August. (Read the rest here.)

My most recent story is about a woman with a very peculiar superpower.  This week we have a darkly comic Thanksgiving story—in list form. (Illustrated with a nearly obscene photo of a raw turducken wrapped in bacon.)

If you're a writer who's up for the challenge of telling a very short story, please read our story submission guidelines. If you know writers, share this blog post with them. The Rose City Sisters blog is accepting submissions.
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Thursday, October 14, 2010

19 Steps

I've made great progress since my hospital stair-climbing meltdown. Thanks to the help of a top-notch physical therapist, I'm now going up and down the staircase with confidence and ease. Here's a video of the technique.

And, of course, I had real motivation to make the climb: my own bed and a hot shower. Gives new meaning to bed, bath and beyond.

Monday, October 11, 2010

She's Got the Look

I love a line from the trailer of "She's Got the Look," a reality show in which long-in-the-tooth and lean-in-the-leg women over age 35 compete for a modeling contract. One 40-something runway-worthy woman gushes in the ad, "The great thing about getting older is that you no longer have fears."

Oh, really? I just want to take her aside and slap the curvy booty on her skinny body (how does she do that?) and say, "Oh, honey, the fears don't go away. You just learn to confront them."

And let me tell you, the show is designed to make the leggy lovelies crack under the pressure of extreme fear, whether it's heights or depths (under water) or something in between. These women quickly learn how to produce a cover-girl shot even though they want to pee their pants.

I have to admit, I haven't felt that kind of head-spinning, stomach-churning fear in a long time. That is, until my physical therapist tried to teach me to climb the stairs. As I watched him demonstrate how to lead with my strong left foot, I felt sick to my stomach. I could feel the fight-or-flight adrenalin surging through my body. My pulse raced and my sweat glands went into overdrive.

I remembered my unsolicited advice to the potential supermodel: ". . . just learn to confront them." I put aside my fears and attempted the left-foot-lead technique, but felt my head spin. "Can we go now? I feel dizzy" I whimpered.

As I used my walker to navigate back to the room, I still felt dizzy and requested a wheelchair.

It's a good thing I'm not a contestant on She's Got the Look. For sure I would have gotten the axe.

Saturday, October 9, 2010

A Flop on the Floor and a Flop in the Kitchen

Just a day before my flop on the hardwood floor, I had a flop in the kitchen. My gourgeres, intended to be lighter-than-air cheese puffs, were as flat and dense as buttons.

Read about the cheese flops at Open Mouth, Insert Fork.

Friday, October 8, 2010

Fear of Falling

Most cancer survivors live with a low-grade fear. It's not something we talk about or dwell on, but it's there. Will I relapse? Will I ever return to the person I was before treatment? Will Meg Whitman become governor?

This broken hip is tapping into a whole new set of fears. The out-of-control feeling of falling is a recurring theme of my nightmares. And now the nightmare has come true.

I fear pain, but I also fear pain meds. Part of that is about fear of losing control (as I did after my one experience with morphine) and part is about fear of addiction. (It didn't help to read Broken Hip Chronicle, which describes the patient's addiction and 3-time withdrawal from pain meds.) I requested meds the first night I was here (emphasizing "the lowest dose possible"), but haven't experienced pain since surgery last evening. But, don't worry. I think my dread of pain will trump my fear of meds.

And now I must admit that I have a fear of wheelchairs. It's not so much a fear of the vehicle as a fear of how others might view me in one. If you've been reading for a while, you may recall the shame I felt at the City of Hope when I had to be pushed around campus. (I even hid my face when I saw my doctor on the grounds.) And you might remember my irrational panic attack when the wheelchair was pushed into the exam room.

My wheelchair-phobia came to light recently when I sat next to a man and his wheelchair-bound wife at a dinner event. When I learned that she was in the wheelchair temporarily as the result of a falling accident, I was surprised and ashamed at my reaction - relief. I'm even more ashamed to admit that a reluctance to talk with her evaporated when I learned that her condition was temporary.

Temporary. Just like my current immobile condition. Just like my hospital stay. And, hopefully, just like my fears.

Thursday, October 7, 2010

Slip, Boom, WAAAH!

Breaking a hip is no laughing matter, but at least I was able to entertain Baby Joseph with a recounting of my slip and fall. "Aachan fell down and went BOOM. And then she went WAAH!" He giggled with delight each time I told the tale and then did his own WAAH imitation.

Yesterday morning I fell victim to a slippery hardwood floor. I went down faster than a slapstick comedian slipping on a banana peel and hit the floor with full force. I cried out in pain and then cried out for help because I couldn't put any weight on my right leg.

Lucky for me, two friends were on hand to hoist me up and escort me to my bed. I assumed that I'd just bruised the hip, but, an hour later, I was still in excruciating pain. A trip to urgent care and an x-ray revealed that I'd broken the bone. Now I'm at Huntington Memorial Hospital in Pasadena, waiting for a 5:30 pm surgery to put pins in the hip.

I'll be here for four or five days and then will work on rehabilitation. I'm considered young for a broken hip, so the surgeon thinks that will work in my favor. Nonetheless, it will take at least six weeks to recover. Six weeks of maneuvering the stairs in our two-story house. Six weeks of depending on others to drive me. Six weeks of work in physical therapy.

All together now: WAAH!

Tuesday, August 24, 2010

The Skinny on Susan

Life is a series of two steps forward and one step back. Or, in my case, two pounds forward, ten pounds back.

In my last post, I wrote about my ongoing struggle to gain weight and my visit to a nutritionist. I was alarmed today when I stepped on the scales at the City of Hope and discovered that I've gone from an underweight 112 to a skeletal 105 pounds. At this poundage, I have to be careful on the dance floor; my sharp, protruding hip bones could be lethal weapons.

Of course, this weight loss follows a week of symptoms that resembled a stomach flu. But I suspect that there's something more going on. For weeks, I've felt an uncomfortable feeling of fullness. And my body seems to have trouble absorbing nutrients A few weeks ago I learned that my Vitamin D levels were at an alarmingly low 9.5, when 30 is low normal. I'm also Vitamin C deficient, which is strange since I make a steady diet of the lemons, oranges and grapefruit from our back yard.

I know I've written before about seeing a GI specialist, and I've finally scheduled an appointment for September 7. I'm eager to get to the bottom of this. (No pun intended.)

Thursday, August 5, 2010

Missing in Action

Yes, it's been a while since I've posted. Friends often ask me why I haven't updated more often, and I tell them it's boring to post (and read), "I'm sick with a cold."

I recently realized that I've been sick almost continuously since early December. Back-to-back flus followed by back-to-back-to-back colds with a short bout of pneumonia thrown in for good measure. Every time I think, "I'm back," my temperature spikes to 101 - my body's signal that I have another cold coming on.

I think I'm at the tail end of a cold and am enjoying the surge in energy and the chance to finally work on "rebuilding."

Speaking of rebuilding, I saw a medical doctor/nutritionist about gaining weight. The mere act of keeping a daily diet diary has made me realize that I really don't eat enough to maintain my weight, let alone pack on a few pounds. (There, I said it.) And the reason I don't eat enough is that I almost always feel uncomfortably full, like I'm going to explode. I don't think this is normal.

Otherwise, life is good. I've enjoyed watching the guest house and the baby grow. The house will soon be complete, but baby Joseph will keep on growing (a bittersweet realization).

If you're interested in a new way of brewing coffee, check out Open Mouth, Insert Fork.

Wednesday, June 30, 2010

If You Can't Find It, Make It - Crab Fried Rice

When my favorite Thai restaurant closed a few years ago, I searched in vain for a crab fried rice that was good as Nana's. Turns out I didn't have to go far to find it.

Go to Open Mouth, Insert Fork to learn how to make Thai crab fried rice - a dish where the crisp flavors of fish sauce, lime juice and ginger complement the subtlety of the crab.

Tuesday, June 22, 2010

A Trio of Good News

My PT scans were clean.

My EOS are under control.

I got to hang out with my friend Nancy, who also had appointments at City of Hope.

Sunday, June 20, 2010

Lifelong and Long Life

It's easy to forget that I'm a "lifer" patient at the City of Hope. But on Tuesday, I'll have several reminders of my forever Hope status.

I'll start off the day with a shot of "Vitamin P," the notorious drug that Michael Jackson mainlined on a daily basis. Unlike the King of Pop, my propofol will be administered by a licensed anesthesioligist in a clinical setting. I'll fall to sleep right before my doctor jabs my rear with a thick needle to extract bone marrow for my annual bone marrow biopsy. And then I'll wake up 15 minutes later, feeling as thought I slept for ten straight hours. I can't wait!

Then I'll spend the next two hours wandering the campus for a mammogram and a bone density scan. (My choice of the word "wandering" is because of my nonexistant sense of direction.) I know it's probably a "business" decision for CoH to encourage patients to come to them for these services, but it's also convenient for me and a comfort to have all of my medical records in one place.

And, finally, I'll meet with Dr. Forman to discuss the results of the PT scan I had last week. The scan will confirm if I'm still in remission or if I've relapsed. Strangely enough, I'm not feeling the usual funny little "is she or isn't she" butterflies. I think it's because my non-patient life has been creating so many flutters that I can no longer tell the difference. I'll also find out if my pesky eosinophils (aka EOS) are behaving themselves.

It will be a long day, but, truth be told, I don't mind being a "lifelong patient," as long as that means that I'll have a nice, long life.

By popular demand: The little man in my life. I love to make him laugh.

Wednesday, June 2, 2010

Bouncing Back and Berries

After months of nearly non-stop sickies, I finally turned the corner a couple of weeks ago. Nothing serious or even EOS-related - just enough to slow productivity and squelch the appetite. But the first thing to return after I've physically bounced back is a healthy preoccupation with food.

My current obsession is strawberries; I can't seem to get enough of them. You can take a peek at my latest strawberry creations at Open Mouth, Insert Fork.

Friday, April 23, 2010

The Three Cs: Cancer, Chemo and Colds

Which of these doesn't belong in the group?

After being diagnosed with an advanced stage of cancer and undergoing some of the harshest chemo known to man, I would think that I would now sneeze in the face of colds. Only wimps complain about colds, right?

Wrong. After catching yet another cold four weeks ago, I've been tired, sluggish and grumpy. An active day is followed by a day of recuperation. And it seems that I no sooner recover from a cold or flu that I've caught another bug.

During my visit at City of Hope yesterday, I told my doctor that I now catch colds and flus more easily (I've had two bouts of the flu and two colds since December, with sick days outnumbering well days 5 to 1), that I'm knocked down harder and that it takes me longer to get back up again. He believes that my immune system was battered by the post-stem-cell-transplant maintenance Rituxan that I took every quarter for nearly two years. We cut short the last infusion because he suspected that my immune system was taking a hit.

"It's one of the things that we doctors often debate," he said. The efficacy of Rituxan for keeping patients in remission is uncertain. But the pummelling of the immune system with some patients on Rituxan is certain.

If someone had come to me with these facts before the decision to go with the maintenance Rituxan, I doubt that my decision would be different. I figured only a fool would pass on a chance for a longer remission because of a fear of sniffles.

But as I reach for one more Kleenex and cover one more cough, I'm beginning to wonder.

Friday, March 19, 2010

A Little of This, A Little of That

I really love the stretches of time when Cancer Banter lies dormant and Open Mouth, Insert Fork sizzles with food activity.

The food overindulgence is paying off. I found out yesterday at the City of Hope that I've packed on seven pounds in a month. (And, if you've been following my food blog, you'll see why.) Now I just need to gain another dozen pounds to go from "scrawny" to "svelte."

[photo forthcoming]

I've also been indulging in some good wines, but still haven't managed to visit the EOS Estate Winery in Paso Robles.

The EOS cap brought me good cheer, and it must also be bringing me good luck. Ever since Nancy brought it over, my EOS have been behaving. Yesterday I found out that they decreased (sans steroids) slightly since my last blood draw a month ago. I believe my EOS woes (and the accompanying stress) are behind me.

I'm always amazed at the creativity and thoughtfulness that goes in to helping others who are going through or recovering from cancer or a serious illness. Instead of a perfunctory, "Let me know what I can do," some of you may have offered to help with nitty gritty tasks, like cleaning out the litter box or scrubbing the toilets. If there's a disconnect between your intentions and your scrub brush, you may want to visit Cleaning for a Reason, an organization that provides free cleaning services for cancer patients. (Thanks to Petrea for forwarding this website.)

A concerned friend of blogger Assertive Cancer Patient lives in a different state, so she couldn't bring over a home-cooked meal. She did the next best thing and made arrangements for a pizza delivery. This works for close-distant friends too, because sometimes it's easier to make a call than make a meal. Just remember to contact the patient to find out when they'd like the delivery made and what toppings the family likes. (And, of course, delivery doesn't have to be confined to pizza.)

I love the creativity of Susan Kitchens, who made an audio tape of her walk, complete with the sounds of zooming cars and cheeping birds, and brought it to a friend who is landlocked in the hospital after an organ transplant. If only there was a way to record the amazing spring fragrances.

I feel uplifted just thinking about the love and thoughtfulness that goes into these acts. They're a great reminder that it's better to do something than to do nothing and feel guilty about it.

Have you been on the giving or receiving end of a thoughtful act? I'd love to hear about it.

Monday, March 1, 2010

Becoming Dis-Oriented

Disorientation is nothing new to me. I was born without a sense of direction.

But lately I've been thinking about the way marketers use the term "Oriental," as in "Oriental Flavor Ramen."

Don't get lost on your way to Open Mouth, Insert Fork.

Monday, February 22, 2010

The Lazy Life

Is taking the easiest, least stressful route being "lazy"?

I think so, but I've finally made peace with "lazy." In a good way.

Read more about my lazy luncheon at Open Mouth, Insert Fork.

Tuesday, February 16, 2010

Nursing Sick Dogs Back to Health

Any patient with a dog, knows that our faithful companions immediately sense when we're not feeling well and then do their best to help lick our wounds.

Last night was my turn to help out Betty, our wonder mutt. A little before 5 pm, she started coughing in convulsions. She lost bladder and bowel control. She wandered into the spare bedroom to isolate. Soon, she lost the strength in her legs. She couldn't walk and I couldn't carry her, so my neighbor came to the rescue and gave Betty a lift to the car.

We rushed to the emergency hospital in Eagle Rock and arrived just as they were opening at 6 pm. I was afraid that it was time to say goodbye to my faithful girl. But she pulled through, in spite of literally turning purple, a collapsed lung and a host of other problems set off by an inability to breathe.

We're hoping that Prednisone (the same drug that I take for rising EOS) reduces the swelling in her trachea so that we don't have to do surgery.

When we were at our local vet's office this morning, I stepped on to the giant scale and got a shock. "Is this scale correct?" I asked the vet's assistant in disbelief. Of course, it was. I just couldn't believe that I tipped the scales at 110 - an eight pound weight loss in less than a month. (This in spite of calorie contributions in the form of mac 'n' cheese and soups from two friends.) I've been having a host of ongoing GI problems, which I'm sure explains the plunge in pounds.

I'm scheduled at the City of Hope on Thursday and plan to ask for a referral to a GI specialist.

In the mean time, we sick dogs will just have to stick together and nurse one another back to health.

Saturday, January 30, 2010

Eating My Way Through a Bucket List

I'll tell you this much: I'd much rather be talking about bucket lists on my food blog than on my cancer blog.

Read about what happens when restaurants kick the bucket at Open Mouth, Insert Fork.

Saturday, January 23, 2010

Let the Sun Shine In!

After a week of soup and stew weather, the clouds have parted and it's time for a celebration of citrus.

Wander over to Open Mouth, Insert Fork to find out how I've been using the back yard citrus.

Friday, January 22, 2010

It's Raining, It's Pouring, but Food Isn't Boring

Energy is returning, appetite is back and the kitchen's been getting a good workout. (I've even gained four pounds in the last two weeks.)

See what's cooking at Open Mouth, Insert Fork.

Thursday, January 21, 2010

Non-Chemo "Chemo Brain"

My brain is a very fickle creature.

Today I went to City of Hope for my fourth of five "chemo brain" tests. I'm part of a clinical study that's tracking my cognitive functioning from pre-stem-cell transplant to three years post-transplant. And, not to brag, but in some areas, I'm as sharp as a tack. "Wow! Noone has ever gotten that far before," gushed the test administrator. Or, "You're the first person to complete that entire section." Just don't ask me for directions to the restroom.

And I have an uncanny ability to hear a list of up to nine scrambled digits and letters and repeat them back in numerical and alphabetical order. I even amaze myself. But don't dare ask me for my office phone number.

I guess we're all like this. We have our strengths and we have our weaknesses. And how much of the weaknesses can be pinned on chemo or aging or peri-menopause or post-menopause or just the way we're wired is anyone's guess.

That's why the City of Hope is looking for a non-chemo control group to enroll in the same cognitive study.

If you're between the ages of 18 and 75, the series of 90-minute tests could be an excellent way to test your memory, focus and mental agility. The administrators do not share the results of the tests, but it's easy to gauge how you're doing. And, if you're really concerned about your performance on a particular test, the neuropsychiatrist who is the principal investigator will talk with you. (As she did with me last year when I cried out, "I've gotten stupid." She assured me that I had not.)

As a little token of appreciation City of Hope will give you a $20 Target gift card for each of the five tests.

Email me at susancarrier AT if you'd like more information or if you'd like to participate.

After all, a mind is a terrible thing to waste.

Recommended Reading: Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus by Dan Silverman, MD, PhD and Idelle Davidson

Sunday, January 17, 2010

A Roll in the Cabbage (Old Fashioned Cabbage Rolls)

I still have a few pounds to gain back and, lucky for me, I'm hungry. Check out one of my favorite comfort foods over at Open Mouth, Insert Fork.

Sunday, January 10, 2010

What's in Store for 2010?

For the last two years, I've started the New Year brimming with optimism. In 2008, right after my successful auto stem cell transplant, I was giddy about the endless "what if" possibilities of the new year. I followed up with musings on the challenge of "rebuilding." A few days after toasting to health and happiness, I landed back at the City of Hope. That was the same year that I became debilitated from the high eosinophil count in my blood. And the year that my crinkling skin was diagnosed as cutis laxa. And the year that I made a difficult personal decision.

In 2009, I lived a charmed life for the first few weeks of the year. I vowed to live simply, drink more Champagne and sparkling wine and find the ultimate crab cake recipe.Very little effort on my part seemed to produce effervescent results. But by late-February, 2009 had lost its fizz.

And 2010? PPFFBBTT! That's a giant raspberry to the New Year. I woke up on January 1, sick and alone. I went on to get dumped and then thrown (cough, cough) out of a New (cough, cough) Year's open house party. (The two incidents were unrelated.)

I saw Dr. Forman last Thursday and learned that I've dropped 8 pounds in 4 weeks. That's in addition to the 8 pounds that went missing between Halloween and Thanksgiving. The 16-pound loss brings me down to a scrawny 114 pounds on a 5'10" frame. I felt dizzy because my blood pressure was a ridiculously low 80 over 36. I still have to pace my days because I become fatigued easily. The reason for this? We haven't a clue. I just know that, for the third year in a row, I'm back to "rebuilding."

This all sounds dismal, but one advantage of having a blog is the ability to look back. Yes, I had that little unplanned 11-day stay at Hotel Hope. But I bounced back and, just a few days after my discharge, took a solo trip to SF to visit my ailing friend Bob at the Veteran's Hospital.

And, yes, the eosinophils laid me lower than the chemo from a stem cell transplant, but that didn't stop me from taking two trips to SF to be with Bob that summer. My friend Kiki and I even got to see him on his last day on earth.

And I recovered in time to see my brother and his bride Bonnie get married at our house and garden in September.

I'm writing all of this to give me perspective. I was tempted to write off 2008 as a terrible year punctuated with illness and "rare" disorders and 2009 as a stressful one peppered with uncertainty. I'm already set to pop 2010 into the dumpster. And I'm always ready to belittle myself for not bouncing back more quickly after an illness, until the blog makes me realize that I was doing the best I could each step of the way.

Looking back, I see that our years and our lives are a a frustrating blend of good and bad, charmed and cursed, memorable and forgettable.

Now let's take a look at 2010, the year that I'm trying to salvage from the dumpster. I think life owes me a great year of health and happiness in 2010, especially since it's starting off so lousy. Don't you agree? That's what I'm hoping.

Truth be told, I don't know if life will continue to throw curve balls in 2010 or give me a breather on the bench, but I do know this. I'm strong enough to deal with whatever the year has in store. More important, at my weakest or my strongest, I could never make it without the love and support of my family and friends.

That reminds me of the second day of 2010, when I spent the afternoon with an old friend I've known since she was a toddler. She, her husband and two preschool children were here for the OSU Rose Bowl game, so I jumped at my first chance to see her since her wedding seven years ago. Our strong bond of reconnection more than made up for feeling like a social pariah just the day before. Good and bad. Charmed and cursed. Sometimes they're in the same day, sometimes in the same week, often in the same year.

Looking forward to a year with endless, positive possibilities. And a lot of resilience.