Alive and Well

Cancer Banter has been dormant for nearly two year. Of course, that's a good thing. Cancer, treatment and recovery now seem like things from the distant past.

These days, when I make a new friend, I don't immediately divulge my status as a "cancer survivor." (Not that I ever use that expression.)  But recently, after divulging my past as a patient to a new friend,  I received an email that made reference to my "life changing experience."

That phrase always makes me pause and think about how my life has changed post-remission.

I started thinking about this few months ago at a party. An old friend gushed, "You must wake up every morning so grateful to be alive." At first, I considered lying and telling her what she wanted to hear. But, instead, I looked her straight in the eye and said, "Oh, hell no."  The initial "I'm lucky to be alive" euphoria wore off a long time ago, and now I have to remind myself to be grateful for each day.

Shortly after I finished my treatment in November 2007, I blogged about my fearless new take on life.  I plunged into life with a new-found intensity.  During this brave new period, I attended a toddler's birthday party and noticed a guest inching away as I spoke. Then she sheepishly muttered, "You certainly are intense." Note to self: Take it down a notch before attending a toddler party.

But, like my lucky-to-be-alive attitude, my intrepid lease on life slipped away. After a front-car-seat on one of life's most challenging thrill rides, the cancer coaster, and a brief post-coaster high,  I was ready to play it safe.

The Silver Bullet

A year ago at Knott's Berry Farm, I looked up at the menacing coasters and thought about the thrill rides I've been on as a patient and a parent: up, down, sideways, round and round and upside down. The next thing I knew, I was waiting in line with flocks of middle school students for the Silver Bullet, described on the website as an "aggressive thrill." And, in spite of my nonstop screams, the ride was more exhilarating than frightening.

When my boyfriend insisted that we sit in the front car for Montezooma's Revenge, I reluctantly agreed. And, much to my surprise, I loved it.


So, after a few rides, both real and metaphorically, I have this advice:

• Contemplate the course and mentally rehearse the scariest sequences.

• Go with the flow. You can either bounce like a greenhorn trotting on a horse or flow like the Silver Surfer.

• Remember that almost everything is temporary.  
• Enjoy the ride. 

Back to Pole Dancing

Friend Anna helps hold down Puss while I prepare the needle.
A bag of fluids on a makeshift IV pole brings me back to my pole dancing days.

There's nothing quite like a feeling of accomplishment. I felt that when I first mastered the art of dancing with my two-left-wheeled IV pole partner when I was a patient at the City of Hope.

And I felt it more recently when I found myself in the reverse role of caretaker. My aging and cantankerous cat Puss needed fluids administered through the skin on her back. Each time I prepared to pierce her flesh, I repeated my new mantra, "It's only skin. It's only skin." When I managed to jab the needle and then hold her still for five minutes (with the help of my friend Anna), I felt a sense of relief. The second time, when I did the deed solo, I felt a genuine sense of accomplishment.

Now I'm about to do another fear-inducing act with a pole. A new friend who's organizing a fund raiser for Be the Match has asked me to do the pole dancing skit that I created three years ago for The Big C. And, just like I knew that poking the cat with a needle was for a good cause, I'm going to shed my fear because 100% of the evening's proceeds will assist with adding new potential bone marrow donors to the Be the Match registry.

I hope you'll join me on Friday, August 26, for a fun evening of wine tasting, appetizers, a silent auction, music, a beautiful and historic Pasadena venue and, of course, some pole dancing.

You may purchase tickets online at www.bethematchfoundation.org/winetasting

Feeling Guilty?

I've been suffering from blogging guilt, gardening guilt and grapefruit guilt. At least there's a cure for the last one. Read all about it at Open Mouth, Insert Fork.

She's Back!

It's been more than six months since I last posted on Cancer Banter. If anyone is still reading, you may have assumed one of three things: I was a) dead b) alive but sickly or c) alive and well.

I'm happy to report that the answer is "c," alive and well. After a year of non-stop colds, flus and pneumonia, punctuated with stomach ailments and plummeting weight, and culminating in a fractured hip and the death of my father, I'm back. Back to my goal weight, back to my old (before cancer) energy level and as close to feeling as "normal" as it gets.

But enough about me.

I'd like to introduce you to Jeanne, the Assertive Cancer Patient. She's taught me how to be assertive without being obnoxious, how to be your own best advocate, how to question everyone and everything, how to make arrangements for your own end-of-life hospice care and, most important, how to embrace life whether you have six months or sixty years to live. I'm proud to count her as a friend.

Jeanne has incurable, metastatic breast cancer. A year ago she and her doctors concluded that she had come to the end of her treatment options. That's a euphemism for "that's all folks." Enter T-DM1 - a miraculous new drug available in a clinical trial. Jeanne was lucky enough (or perhaps plucky enough) to enroll in the trial and, for the first time in more than a dozen years, is in remission.

But here's the catch. Jeanne must travel from Seattle to Southern California every three weeks to participate in the clinical trial at a hospital in Highlands. The travel schedule has taken a toll on her physically, emotionally and financially.

The drug will be available at a clinic near Jeanne in September, but, in the meantime, she must make four more trips to Southern Cal to receive this life-extending drug. She has managed to raise more than $3,200 in the last few weeks, but she needs just a few hundred dollars more to finance the trips.

Can you spare $10, $20 or more to help make this happen? She's fought for and won the privilege of staying in the trial. She's fought for and won the ability to receive the drug in Seattle in September. Let's not let her have to fight to raise the money necessary for travel expenses.

Click HERE to contribute to Jeanne's Travel Fund.

For every $20 donated, you will be eligible for a drawing for this beautiful Chinese swan necklace created by Jeanne.

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.

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.

Related articles

• Writing Flash Fiction Won't Hurt You (quazen.com)
• The #1 Flash Fiction Writing Skill (writinghood.com)
• Great Flash Fiction Ideas About Dialogue (writinghood.com)
• How to Create Great Flash Fiction Characters (writinghood.com)
• Writing Prompts to Start Your Flash Fiction Story (rosecitysisters.com)

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.

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.

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.

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.

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!

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.)

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.

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.

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.

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.

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.

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.

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.

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.