Thursday, December 24, 2009
This is true for the most part, and, believe me, I work at it. From the beginning I've tried to be honest while putting a positive spin on the bleakest of circumstances. Nonetheless, I've never wanted Cancer Banter to be simply upbeat; I want it to be an accurate account of my experiences. If for no other reason, I want to look back and think, "That was a terrible time, but I struggled through."
But now it's been nearly a month since I've written. The upbeat part of me wakes up every morning and thinks, "This is the day that I turn the corner." The downbeat part of me wonders irrationally, "Am I relapsing?" The just plain beat part is sleeping a lot.
I first went to the ETC (City of Hopes emergency room) on December 4 with a 104 degree temperature. I was given steroids and antibiotics through the IV and then sent home with an oral prescription for six and seven days of the same drugs.
Two days later my temp. bounced back to 104, but I felt well as long as I was on the steroids. I saw Dr. Forman two weeks after the visit to the ETC, and my blood counts and temp. were normal.
It's now been two weeks since that visit, and my temperature continues to be a bouncing ball, climbing to as high as 100.8 in the afternoon. My exhaustion level is an 8+ on a scale of 1 to 10.
The upbeat me says to just wait until the next appointment in two weeks, but the downbeat part wants to sound the alarms.
Friend and fellow City of Hope patient Nancy Sakakura (now that's one upbeat gal) made my day on Tuesday when she drove up from Orange County with a special gift: an EOS cap. Even when I saw that the gift was a cap, I didn't guess that it was the coveted EOS one. (When I'm feeling better, I'll take a picture of me with the cap and post.) Special thank you to Heather at EOS Estate Winery, who donated a cap to Nancy and me when Nancy shared my story. Nancy added to the gift by finding the perfect T-shirt from the winery - a nice French fitted tee that says "Live each day" on the front and features the graphic of a wine glass on the back.
Both the cap and the Tee are enough to make me feel . . . upbeat. I can't wait to wear them to my next City of Hope appointment.
Saturday, November 28, 2009
That means that I'll be headed to Newport Beach a little sooner for that uninterrupted R&R (reading and 'riting) time.
Feel like getting away? Give me a call or drop me an email.
Monday, November 23, 2009
I might have a hard time justifying a jaunt to the Eos winery for a taste of the liquid grape, but when it's on the way to Stanford Cancer Center, that's an entirely different matter.
I'm scheduled to see EOS specialist Dr. Jason Gotlib on November 30. The EOS wine specialist is on the calendar for November 29.
Now I can rest again.
Sunday, November 22, 2009
If my friend doesn't relinquish his, I may have to schedule a stop at Eos, the Paso Robles winery, on my way to a visit with the Stanford EOS specialist.
Don't you love the symmetry of that?
And I just reread an Eos post from friend and goddess gal Finnegan Begin Again. She reveals how Aphrodite, goddess of love and beauty, turned Eos, the goddess of the dawn, into a slut.
Besides the chuckle, the story is a good reminder to "Channel this goddess: when shrouded in darkness, when it feels like the day will never dawn. It always dawns. Follow Eos. She'll lead you to the light."
I can see that light. And there just may be a glass of wine to go along with it.
Friday, November 20, 2009
I laugh every time I think of those words on a doctor's letter nearly three years ago. It's funny because my weight gain at that time wasn't all that mysterious: I was eating too much and moving too little.
I think we humans are always in search of an explanation. If we can't find one, we make one up.
And when there is no explanation, as in the case of my whacky eosinophils? Doctors explain it away with one simple word: idiopathic. It means "of unknown cause," or, in med-speak, "Hell if I know."
Keep this word in mind the next time someone asks a difficult-to-answer question. "How did this house get so messy?" "Why are our sales down for November?" "How did you get so brilliant?"
Simply shrug your shoulders, put on that enigmatic smile and say, "It's idiopathic." You might just get away with it.
Thursday, November 19, 2009
The eosinophils (EOS), the component of the white blood that fights allergies or parasites, are climbing once again. It makes me think of a little story that the Pasadena Library children's librarian often told when Cynthia was a little grasshopper. "They went up the hill and down the hill and up the hill and down the hill and up the hill and down the hill."
They (the EOS) went up and then they went down with the prednisone. Then they went up when I tapered off the prednisone. Then they went down with prednisone. Then I tapered off the prednisone again, and we're climbing that hill for the third time.
What can I say? I'm tired of climbing the hills. I hate this "in between" stage when I must carefully pace myself if I don't want to collapse. (I'm back to making dates and breaking dates.) I don't like feeling out of breath after climbing two flights of stairs. I'm deathly afraid of becoming as sick as I was during the summer and fall of 2008. I hate the manic, sleepless side effects of the treatment - high dose prednisone. I want off the treadmill.
Now, here comes the tricky part. When I saw the EOS specialist at Stanford last spring, he advised me to see an allergist after I tapered off the prednisone so that we could see if allergies were the driver of the EOS. I saw a very competent allergist last week and learned that I'm allergic to pollen (no surprise), dust mites (no surprise) and pets (BIG surprise). We have two cats and two dogs.
So . . . we know I have allergies. And we know that my EOS are rising. We just don't know if there's a connection between the two. The allergist recommended that I isolate myself from the pets for two weeks and then immediately measure my blood counts. I've decided to take a friend's offer to use her Newport Beach apartment for two weeks. I pack my bags right after Thanksgiving.
Just doing my little bit for science.
Monday, November 16, 2009
Since I'm really too busy to be a patient, I popped into the Patient Resource Center between appointments to check and send emails and finish up a couple of small projects.
After letting out an expletive at the keyboard, I realized that I was emoting while typing. I turned to the lady to my left and apologized, "Gee, I'm sorry for all the sound effects."
"That's OK," she laughed. "You're funny. It's like sitting next to the Sandra Bernhard of computers. You have gone through every possible emotion in 20 minutes."
And, to make her point, she said, "Here let me imitate you." She went through my soliloquy, which ended in "OH, SH**!"
"You should have seen me when I found out that they had removed the vending machines next to the pharmacy," I told her.
"I can only imagine."
Friday, November 6, 2009
She told me that our friend Jerome has finally found a donor match after a search of more than two years. I had somehow missed this Facebook announcement, wrote him back right away and found out that he's scheduled to go in for his stem cell transplant on November 15. I might be a little reserved when I find out I've won a raffle prize, but I go a little crazy when I get this kind of news.
But minutes later, while sifting through the blogs I follow, I spotted this headline: Brad is Gone. I immediately burst into tears to learn that this larger than life Texan died yesterday. We both got our diagnosis of Mantle Cell Lymphoma, Blastic Variety, at around the same time and followed one another closely through our blogs and email. The blastic variety has a reputation for being aggressive and treatment resistant. This proved to be the case for Brad.
I never met him in person, but I'm going to miss him dearly. I only wish that just once I could have given him the kind of embrace that Krissy gave me yesterday. I love to receive one of Krissy's hugs and I love to watch her give one because you see her face glow and you feel pure love, appreciation and support.
Just one more reminder of how good it feels to be supported and the importance to wrap our arms around others (both literally and figuratively) every chance we get.
Monday, October 26, 2009
Tuesday, October 20, 2009
At A3M's benefit dinner and concert last Saturday, my raffle ticket was pulled out of a hopper with thousands of other ticket stubs. Just as I was thinking about how I would spend my $500 windfall, I heard the emcee gasp in amazement.
"I can't believe this, but the same person has won twice." She once again called my name and announced that I had just won an NBA basketball signed by the entire Laker team and two tickets on the floor for a Laker game. I was too busy mentally calculating the odds of being a two-time winner to scream in excitement. Besides, I have this minor character flaw - I don't bleed purple and gold.
On Monday morning I was contemplating how I would spend my lucky money. Should I donate it back to A3M or another favorite charity? Should I treat four friends to a lavish dinner? Should I continue my pursuit for the perfect purse?
These thoughts were swirling as I pulled out of the parking lot after the YWCA' s Women for Racial Justice Breakfast. Then I heard the unmistakable crunch of mangled metal. My Prius had a close encounter with a parking lot pillar.
Now at least I know how I'll spend my windfall. Oh, lucky me.
Monday, October 19, 2009
I won't list each friend by name, but they all had at least a half dozen things in common: access to the best cancer centers, doctors and treatments; a strong support network of family and friends; the proverbial positive attitude and a feisty determination to lead full, vibrant lives.
But sometimes that's not enough.
Take two recent deaths: Nick, whose aggressive cancer roared back right after a bone marrow transplant and Gahlit, a fellow blood cancer patient at the City of Hope.
My initial bond with Gahlit was based on a mutual admiration of our head coverings. The conversation soon turned from hats to healing, and before we knew it, we were exchanging email addresses and phone numbers. The emails flew back fast and furiously as we shared our life stories and discussed our hopes and fears.
I'll never forget when I visited this type-A dynamo right after her first donor stem cell transplant. She was simultaneously investigating health insurance options for her nanny, while buzzing the nurses about medication while she had a video conversation with her two-year-old daughter.
She relapsed three months later and underwent a second stem cell transplant with the same donor.
She rebounded and continued to live her life as she always did both BC and AC (before and after cancer) - with a vengeance.
When the cancer came back a third time, her friends all reminded her, "You're strong, you'll beat this again." But sometimes, in spite of the strength of Samson, cancer has its way. She died at home last Tuesday morning.
Gahlit's death, on the heels of Tony's and Nick's passings, and just a few months after the death of 28-year-old Michelle, has left me sad and weary. I was even beginning to develop a "Why bother?" attitude.
As luck would have it, I sat next to the West Coast director for Be the Match (formerly known as the National Bone Marrow Registry) at last night's benefit dinner for A3M. I told her about my despair from the recent deaths of a half dozen bone marrow transplantees. She reminded me that there are no guarantees, even after a bone marrow or stem cell transplant, but one thing is certain. Without a transplant, most patients have a zero chance of survival.
That's all I needed to hear to snap me out of my funk and to recommit myself to the efforts to find a match for patients like Krissy Kobata, a 27-year-old Hapa with a rare blood disorder.
What can you do?
- If you're not already registered and you're a minority (Asian, African American, Native American or Latino) or multi-racial, you can order a FREE tissue typing kit online from A3M or check the site for a marrow drive near you.
- You can also order a kit from Be the Match (formerly known as the National Bone Marrow Program) or check the site for a marrow drive near you.
- If you're already registered, consider making a donation to A3M or Be the Match.
- Encourage your family and friends to sign up and Be the Match.
- If you live in Southern California, volunteer with me at an A3M bone marrow drive.
- Organize a drive at your church, synagogue, club, school or other organization.
Thursday, October 1, 2009
He received the donor stem cells in early August and was declared "cancer free" in September. But Nick just learned that he has relapsed. Those same doctors say that he has a zero chance of survival. He is being moved to hospice care.
The odds were overwhelming once. The doctors were wrong once. Let's just hope and pray that they are wrong again.
Thursday, September 17, 2009
I just received an email from a producer at KCET, our LA PBS station. She is working with Lisa Ling on a show about the young (19-29) and uninsured in Southern California. If you know of someone who fits the description below, please have them contact Christal. And, of course, they need it "yesterday."
"PBS is looking for a young person (ages 19 to 29) in Southern Caliornia who is uninsured or underinsured and is now facing a sudden illness, chronic disease or a costly accident. If you know of someone, please hav them contact Christal at CSMITH@KCET.ORG OR 323-953-5272. ALL COMMUNICATIONS WILL BE IN STRICTEST CONFIDENCE."
Thanks for your help.
"PBS is looking for a young person (ages 19 to 29) in Southern Caliornia who is uninsured or underinsured and is now facing a sudden illness, chronic disease or a costly accident. If you know of someone, please hav them contact Christal at CSMITH@KCET.ORG OR 323-953-5272. ALL COMMUNICATIONS WILL BE IN STRICTEST CONFIDENCE."
Thanks for your help.
With cancer, I discovered that (at least for me), vanity was the last to go.
I was reminded of this when I found this photo in my archives the other day.
I'm working out with my theraband during round three of Hyper CVAD at the City of Hope. Note the "chemo clothes" (not a hospital gown), silk scarf and lipstick under the mask.
I feel the most beautiful when I'm strong and energetic, but when chemo or cancer or illness robs us of these qualities, we have to work to find other ways to feel vibrant.
Cancer and treatment now seem like a light year ago, illness from EOS a century ago.
After my springtime bout with EOS run amok and pneumonia, I'm once again working on regaining strength and stamina. I started talking about it nearly a year ago, but now I can say "I'm a runner." You might recognize me. I'm the one in the cute clothes and lipstick.
NOTE: A few weeks ago, I received an email from someone about beauty and the suggestion that I interview a breast cancer survivor. I'm sorry that I accidentally erased the email, but, if you are reading this, could you please resend the information?
Friday, August 28, 2009
I've been busy. Really busy. That's good, right, especially when the busy business has nothing to do with illness or doctor's appointments.
As far as cooking, I like to keep things simple in the summer time. See just how simple things get at Open Mouth, Insert Fork.
Sunday, August 23, 2009
Friday, August 14, 2009
Lately I've been enjoying a different kind of crunch - the sound of munching regional or home-made potato chips.
Are you salivating and ready for more? Go to Open Mouth, Insert Fork.
Wednesday, August 12, 2009
"The Montage has offered rooms on certain slower weekdays this summer at $425, down $100 from the cheapest room two years ago, and the St. Regis dropped its price to $325 a night for a few rooms on off nights. And though Pelican Hill won't cut its sticker price, if you shell out $795 for an 847-square-foot bungalow you get two rounds of golf or two spa treatments thrown in.I think it's hilarious that clientele who are willing to pay the $425 bargain basement price are considered a "different demographic." I didn't know that spending nearly $500 (with tax) for a room qualifies one for the riff-raff crowd.
"From a consumer standpoint, there are going to be some wonderful values," Wise said. "And tee times are more readily available."
But price cutting is tricky for hotels that on weekends even now can command minimum prices of $600 to $800 a night for vacationers. Cheaper rooms at upscale resorts attract "a different demographic," as Wise delicately put it -- people who hoteliers fear might spend lightly in restaurants, damage the furnishings and perhaps alienate wealthier travelers."
If that's the case, I must have been Spa Montage's* worst nightmare. You see, clients can pay for a service at the spa (in my case, a one-hour therapeutic massage) and then spend all day using the facilities and taking fitness classes. My friend and I started our day at 8 am with a cardio class, took a one-hour beach walk with an instructor and capped off the day with a late-afternoon yoga class. The rest of the time we soaked in the steam room or jacuzzi or swam in the pool. I think I must have used about 32 dozen towels. We closed the place down at 9 pm.
My favorite part was standing under the warm waterfall, but the wet pellets shot off my body on to unsuspecting guests. I don't know how to act. I'm used to the $15 Chinese foot massage places.
See? That Wise guy was right. I probably scared away the wealthy travelers.
*For the record, Spa Montage treated us like queens.
Sunday, August 9, 2009
And this time Benadryl, Rituxan and blue fuzzy socks will not be involved.
My good friend Terry and I are headed to the Spa Montage in Laguna Beach for a day of fitness classes, beach walking, steaming, soaking and kneading.
I think this may be just what the doctor ordered.
Saturday, August 8, 2009
That time was a nightmare that I don't want to ever repeat. I came close this spring when the EOS started to go haywire again, but early steroid intervention kept me from going off the deep end.
I'm amazed now at how strong I feel physically and emotionally. But I'm equally amazed at what a fragile little tea cup I can be.
Take last night. I attended a Greek cooking class at hip cooks. I felt young and with-it among the hipsters in a downtown Brewery loft.
When it was time to roll the dolmas, a young woman student crossed the room in her stiletto heels and sweetly advised me to wash my hands because she had seen that I had coughed. (My coughing has nearly disappeared, but it does crop up occasionally, especially at night.) I said, "Oh, of course," and headed for the wash basin.
But on the way back, I coughed again. I knew she was watching me. Should I put my newly coughed-on hands on the grape leaves, rewash my hands or throw my hands in the air and sit it out. I decided to sit on the sidelines and watch instead of participate.
This made me sad because I really wanted to roll a dolma, but I didn't want to risk coughing. And then I started feeling like a social pariah on the sidelines and couldn't smile or enjoy watching the activity. Two sweet women came over and tried to rescue me. I told them about my cough and they said "Poppycock," or whatever hip young women say these days.
I continued to watch, feeling more morose by the minute. I considered fleeing the scene entirely but my growling stomach won out over my middle-school mentality.
When it was time to devour the eight dishes we prepared, I decided to eat in silence. This proved to be more impossible than stifling a cough. The sweet and hip young woman from Silver Lake told me she had coughed for the first 17 years of her life. I took a risk and did something more socially unacceptable than coughing: I told her about the eosinophils. She listened politely and even asked intelligent questions. Then I felt much better.
I began smiling and laughing and sharing stories. And the woman sitting across from me, the one who had asked me to wash my hands, was smiling at me and laughing at my stories.
She didn't hate me after all.
Thursday, August 6, 2009
My sleep may return, but I wonder if road food on road trips is a permanent thing of the past? On my recent fly-drive trip to four southern states, Ohio and WV, I found that good road food is about as scarce as, well, a good night's sleep.
Read more about it at Open Mouth, Insert Fork.
Tuesday, July 21, 2009
Puss is the one who likes attention, but only on her own terms, which means that she must be sitting on my left side. Not the right. Not on my lap. Only the left side will do. She's the one who rejects all but one of the six varieties of canned food produced by Friskies. The one who insists on breakfast at seven and dinner at five. The one who likes to be stroked while consuming her meals. I blame it on her previous owner, a single 82-year-old man who doted on her for more than a decade.
I realized the resemblance when I went to Nordstrom's last week to purchase a new pair of shoes for a corporate gig. I knew exactly what I wanted, something halfway between sensible and slutty. I marched in and told the salesman, "I'm looking for a black pump with a peep toe, a quarter to half inch platform, a sling back and no more than a three inch heel." He marched me over to the perfect pair.
When he brought out the pumps, he also slipped in another box "that I thought you would like." I was delighted. I thought my salesman was like Pandora, the music application that can select tunes you'll love based on past selections. It turned out that it was Pandora's box, not Pandora. I lifted the lid and the foul odor of rubber tires rose like a fresh peel-out on asphalt. Why would he bring me such hideous and stinky shoes?
"These Tory Burch beach sandals are such a good value I thought you'd like them," he explained. "Only $55." I wanted to tell him that I liked quality, not status, and that status symbols without quality were not status at all. I wanted to yell out, "What kind of fool do you think I am to pay $55 for rubber beach shoes that smell like a tire?" Instead, I said, "No, thank you." I was so disappointed in the salesman. I thought he "got me," but he didn't have a clue. (I didn't know that buying shoes could be like dating.)
But there's clearly no doubt that I, like Puss, know exactly what I want. No wonder my doctor, who treats me like an equal, always asks, "And what do you think about this? I know you always have ideas." "Do you mean I'm really opinionated?" I asked.
I once feared that I ran the risk of becoming a "passive patient" because I trust my doctor so explicitly. When I confessed this fear to my (ex) husband, he said, "That's one thing you don't have to worry about." I guess that was a compliment.
Sometimes I think that I'll surprise my doctor one day and just coyly shrug my shoulders, tilt my head and mutter, "Whatever." But even while writing this I realize that's unlikely to happen. Apparently, I'm just not that kind of cat.
Tuesday, July 14, 2009
Funny how a few words can change your life.
Two and a half years ago, it was "You have cancer."
Six months ago, it was, "Mom, I'm pregnant."
Two days ago, it was, "My water broke."
39 hours later, it was, "WAAAA!" - the first sound from baby Joseph.
He arrived a month earlier than expected, but both he and his mommy are healthy and strong.
I, on the other hand, am tired enough to fall asleep standing up.
Thursday, July 9, 2009
Take the 20-something young woman I saw at The Coffee Gallery the other day. She plopped herself down on an overstuffed couch while she waited for her boyfriend. Since she had nothing to do, she stared up at the fans spinning lazily overhead. Soon, she was as mesmerized as a six-month-old. The next thing I knew, she was sleeping like a baby.
“Oh, to have such a simple life,” I thought as I pretended to write. And then I realized that I was entertained by watching someone watching spinning blades. And then I stared some more as she slept. And then I Twittered about it. And now I'm blogging about it. Does it get any simpler than that?
Apparently so. Today I watched a patient at the City of Hope fall asleep while he leaned against a wall. I hopped up, tapped him lightly on the shoulder and offered my seat. He refused and I insisted until I had offered and he had refused three times (that’s the secret number of times one must insist, in case you were wondering). I felt a little bad about waking him and slinked back to my seat.
Within seconds, he was asleep again. I spent the next ten minutes watching him sleep standing. At one point, his head jerked violently back, but, otherwise, he was as unmoving as a corpse. I thought only horses could do this.
I took a break from my sleep-watching to have my vital signs taken. When I returned, I was happy to see the man still slumbering . . . in my vacated seat.
Warning: The next few paragraphs may cause drowsiness and should not be read while operating heavy machinery. However, if you or someone you know is taking Rituxin, the information may have the opposite effect.
I recently read that Rituxin, the monoclonal anti-body that I take every quarter by I.V., can lower resistance to infections, especially pulmonary infections. A blood test can measure the number of infection-fighting immuno-globulins, and, if the numbers are low, patients can receive a special transfusion.
I asked my doctor about this today, and he agreed that it was a good idea to draw a little more blood so that we could look at the immuno-globulin numbers. He also said that oncologists continually debate the merits of maintenance Rituxin because a) it can lower resistance b) the efficacy is debatable and c) Rituxin can no longer be used in relapse cases after it's used for maintenance. I knew about the efficacy debate, but I didn't know about the other two issues.
If I wasn't insured, I would skip the Rituxin. I called billing recently because the cost for one dose of the drug was $18,000. I thought that had to be a mistake, but it wasn't.
My EOS are creeping back up again, so we've delayed any further tapering of the Prednisone. Something else I learned today: I'm my doctor's only patient with eosinophillic issues. Oh, how I love being the one and only.
Alright. You can wake up from that snooze now. I'm just sorry I wasn't there to watch you.
Friday, July 3, 2009
I can understand the allure of the drug because I recently came under its spell (administered by an anaesthesiologist, of course). I was half joking when I wrote this:
But don't tell anyone. If word gets out about Vitamin P, it could be the next illicit street drug. Just imagine the applications. Sleep-deprived parents. Cramming college students. Anyone wishing to sleep through 15 minutes of boredom, pain or grief.I just wish it wasn't a joke.
One article described the discovery of Propofol in a home as "unusual." No, raising a pet chimp is unusual. Wearing a mask in public is unusual. The at-home use of a powerful drug, intended to be administered by a licensed anesthesiologist in a clinical setting, is unheard of, dangerous and tragic.
Monday, June 29, 2009
I'd almost forgotten that I was once a samurai in training. When I was in my early 20's and desperate to get in touch with my Japanese side, I took kendo lessons at a dojo in Monterey Park. Back then, an adult sword-fighting woman was a rarity.
Here are a few of my favorite kendo memories:
Tora! Tora! Tora! My sensei and classmates called me Tiger because my birth surname (I hate "maiden name") was Strother, pronounced Su-to-ra-da in Japanese. The middle part of the name, tora, means tiger.
There's something about a girl in uniform: Sometimes Kumie (my little-sister-like friend), her family and I would stop for food while wearing our kendo uniforms. It never failed: men would chat me up and then ask for my phone number. I felt like a Samurai seductress.
Lessons Learned: Fight through the pain and clean up after yourself: Once while I was practicing with an opponent, a sliver of glass became embedded in my bare foot. When I saw the trail of blood on the wooden floor, I asked the old-school Japanese sensei if I could stop. He nodded at my opponent and I knew I had no choice. I continued to wield my sword while smearing streaks of red on the floor. Of course, I was responsible for mopping up my own blood when the match was over.
If you go back and read old Cancer Banter posts, you'll find that I've never used the popular lexicon of battling or going to war with cancer or eosinophils. (I don't have a problem with other people using this language; it just never felt natural to me.) So why do I suddenly want to embrace my inner Samurai? To paraphrase Lance Armstrong, it's not about the sword.
According to this site that lists the top ten characteristics of a Samurai professional, the ultimate warrior maintains integrity, displays loyalty, is resolute, plans relentlessly, seeks advantage, continuously improves, flows with (not against), has personal discipline and self control, displays personal courage and acts industriously.
I especially like the idea of going with the flow:
Life is continuously in balance. Accept gracefully both victories and setbacks. Contending against instead of working with is a losing strategy. Go with flows. Yield what cannot be won. Adjust. Agility and flexibility are far stronger than direct opposition. Learn to change and progress endlessly.So, which Samurai should I channel?
Wednesday, June 24, 2009
Don't get too excited.
For the last 20 weeks, I've been leaving my comfort zone and taking improv classes at Bobby Oliver's Standup Academy. How much riskier does it get?
How about getting up on a stage and performing at The Ice House in front of family, friends and strangers?
I'm glad I took the risk.
But I'm even gladder it's over.
Thursday, June 18, 2009
Curl up with a favorite book.
Enjoy a complimentary room service lunch served in bed.
Indulge in a never-ending supply of warm blankets.
Shut out the world.
I have been looking forward to spending the day at the spa at the Montage in Laguna Beach ever since I toured the lavish resort in November.
I still haven't made it there, but I did get to experience the next best thing: I spent most of yesterday at Hotel Hope for my quarterly fix of Rituxan.
Hotel Hope doesn't have much of a view, but it does offer at least one thing that the Montage doesn't. After the nurse pushed Benadryl through my veins, I settled in for a deep, three-hour sleep.
Shut out the world indeed.
Tuesday, June 16, 2009
I wrote before that I was brave enough to take an improv class and brave enough to perform but just not brave enough to do it in front of anyone who actually knows me.
But, what the heck. I'm feeling stronger and more willing to take risks.
I'm inviting you all to come to my improv class showcase on Tuesday, June 23, at 8 pm at The Ice House in Pasadena.
My performance may be hit or miss, but there are some seriously talented performers in my class. And I wrote a skit, being performed by two actors in class, that is actually pretty funny.
And, the way I figure it, having friends there may actually help me feel supported, not spooked.
(I just hope that my finger doesn't decide to do that "thing it does" while I'm on stage. Maybe I can improv around it.)
This has been happening to me a lot lately, and it can be a bit challenging to blaze the headlines of my life without sounding tragic: stage four cancer, health challenges, separation, pregnant (unmarried) daughter.
I try to follow the negative with a positive:
- "I was diagnosed with cancer two years ago, but I'm now in remission."
- "I've had some health challenges, but I've bounced back each time."
- "G. and I separated a year ago, but we've remained friends."
- "C. is pregnant and this was a shock, but I'm starting to get excited about the baby."
Sometimes I forget this and need a reminder of just how lucky I am. I recently found it through Jeanne Sather (aka The Assertive Cancer Patient) and her Charmed Bracelets. She makes one-of-a-kind bracelets or necklaces using clients' charms or unique charms that she's found.
I first fell in love with the jade and silver Jeanne used in this bracelet. When I saw that one of the charms was a turtle, the Japanese symbol of long life and security, I was drawn in. When I read about Jeanne's connection with Japan, I was sold. This bracelet was made for me.
I love wearing something that is beautiful, personal, filled with symbolism and created by a strong, artistic, tell-it-like-it-is woman.
Do you need a reminder that you live a charmed life, in spite of challenges? Are you looking for a special gift for a special friend? Then check out Charmed Bracelets.
And if your life just really sucks right now, then all the more reason.
Sunday, June 14, 2009
It happened at least a dozen times that day, including when my blood was being drawn. The phlebotomist said she'd never before seen anything like it.
My big toe also likes to take on a life of its own, levitating straight up into a 90 degree position.
It turns out that the cramping and contortionism are both side effects of the Prednisone.
On the same day, I noticed that my skin looked thin and was full of sores that wouldn't heal. My legs looked like the cats had mistaken them for a scratching post. And I had big purple splotches on my upper legs.
You guessed it: side effects of the 'roids.
I'm so glad to be tapering off the Prednisone. I'm now taking 20 mg a day instead of the original 60 mg. In about six weeks, I should be completely tapered off.
Goodbye eating everything I want, hello sleep.
Friday, June 12, 2009
While I was at yesterday's appointment, I found out an interesting tidbit from my doctor, who is not only the chair of the hematology department at CoH but also literally wrote the book on bone marrow transplantation.
I asked him what determines if the donor gives bone marrow (from the hip, 20% of cases) or stem cells (from peripheral blood, 80% of cases). The answer was simple. Children require bone marrow, not stem cells for a successful transplant. Interesting, huh.
Many potential donors confess that they're willing to donate stem cells through their blood, but aren't sure if they could undergo the minor surgical procedure of removing bone marrow through the hip. I hope the fact that the life-saving bone marrow would go to a child would make a difference in that person's decision.
Saturday, June 6, 2009
But that doesn't mean you're off the hook if you happen to be Caucasian. We don't tell potential donors this at drives, but the National Bone Marrow Registry reimburses A3M for the tissue typing for minorities and mixes, but A3M must pick up the $52 tab for registering Caucasian donors. The same $52 charge applies for anyone who registers online.
That's why Caucasians (and everyone) needs to act quickly. Sign up online HERE between June 8-22 and use the promocode a3mmarrowthon and the tissue typing cost of $52 will be waived.
If you live in Southern California, you can also sign up at one of the many donor drives sponsored by A3m. Go to http://www.asianmarrow.org/drives/index.php for a complete list of drives.
If you are lucky enough to be someone's match, let me also remind you that the stem cells are harvested from the blood in more than 80% of the cases. That annoying little surgical procedure of taking the bone marrow from the hip is becoming a rarity.
So, what's YOUR excuse?
The Mutts for Marrow raised almost $4,000 for the American Cancer Society and, with the help of A3M, signed up 45 Mutts and Minorites for the National Bone Marrow Registry and walked more than 50 miles.
King and Queen of the Mutts, Bill and Susan
Friday, May 29, 2009
Fear of Fiction: When I was a child, I wrote fiction with abandon, but gave up in high school. Those really great writers managed to uninspire me. I could never come close to writing anything as great, so why even try? I've just broken the fiction fast with a submission to pal Paula Johnson's Rose City Sister's Flash Fiction site.
I Hate Irrational Numbers: I'll be reading this piece at the IWOSC (Independent Writers of Southern California) Reads Its Own event on June 7, 2 to 4 pm, at Barnes & Noble at The Grove,
Improv Improvement: My improv class will be showcasing its work at the Ice House Comedy Club in June. I'm brave enough to take the class and brave enough to participate in the show, but I'm not quite brave enough to invite my friends. (At this point, potential humiliation in front of people I'll never see again seems preferable.) But bear with me; I'm workin' on that.
Thursday, May 28, 2009
The moment that Brownie moved in, I knew that I had made a fatal error. (You can read the whole story, "Help, There's a Chihuahua in My Kitchen" here.) Brownie didn't care that she had an eviction notice. She was here to stay.
Brownie was a pain. She yapped at guests, terrorized the cats and annoyed Betty. She threw me into frantic yelling fits of "SERENITY NOW!" But, somewhere along the line, I started to fall for the little terrorist. Just yesterday I spent more than an hour in our back yard watching Brownie and little Coco (yes, another dog) scamper about.
You can see where this is going, can't you? (I, on the other hand, am very slow to pick up on foreshadowing.)
When Cynthia woke up this morning and found that Brownie wasn't in her room, she looked outside and found her dead dog in our side yard. Brownie's neck was bleeding and her entrails exposed. We suspect a vicious raccoon.
All of us are sad and traumatized. And I never thought I'd say this, but I miss you, Brownie.
Tuesday, May 26, 2009
We'd still love to have our local friends join us for all or part of the day. Our team has raised enough money so that we can "redistribute" the contributions to other team members. That means that you can get a free T-shirt, free breakfast-lunch-dinner and an endless supply of Starbuck's coffee, even if you haven't raised a dime. All you need to do is click here or on the "Relay for Life" logo to register for our team. (Pick the FREE team member option.)
We'll also be signing up potential donors for the National Bone Marrow Registry. If you know of any minorities or "mutts" between the ages of 18 and 60 who aren't on the registry, please encourage them to come by the Mutts for Marrow tent on Saturday.
Here's the schedule of events for Saturday:
8:00 am Registration and Breakfast
9:00 am Opening Ceremony
9:45 am Survivor Lap
10:00 am Caregiver Lap
10:15 am Parade of Teams
Noon Balloon Toss
12:30 pm Lunch
1:00 pm Frozen Tee Shirt Contest
5:00 pm Bra Contest
6:00 pm Dinner
8:00 pm Miss Relay Contest
9:00 pm Luminarias Ceremony
9:30 pm Remember Walk
I haven't pushed hard for donations this time because so many of you were so generous for the Leukemia and Lymphoma Society's walk in September. But, if you'd like to donate to the American Cancer Society on behalf of the team (we're just shy of our $2,500 goal) or me (I'm $50 shy of my modest goal) or any team member who hasn't yet raised money, we'd all be appreciative. Just click here or on the "Relay for Life" logo on the left side of this blog.
Hope to see you on Saturday!
Sunday, May 24, 2009
Those words might come as a surprise from a writer, but, for as long as I can remember, I’ve been smitten with numbers as much as words. Numbers are comforting. They explain. They form patterns. They offer proof. They tell stories. They can predict the ending for those stories.
Or so I thought.
Turns out that my elaborate spreadsheets, line charts and data during treatment did little in the way of comforting, explaining, proving or predicting. At best, the numbers gave me the allusion of control.
In spite of my disillusionment with digits, I'm still fascinated by the science of predictability and the age-old question, "What are the odds?"
I was especially intrigued with this NY Times opinion piece by "the editors" and Leonard Mlodinow, author of “The Drunkard’s Walk: How Randomness Rules Our Lives."
The author's answer to this email question struck a chord:
I'd never heard the uncertainty/unhappiness theory, but I can certainly relate. For me, the hardest stretches during diagnosis, treatment and remission have been the pockets of uncertainty. And Mlondinow gets it right in his response.
An earlier post by the psychologist Daniel Gilbert makes the argument that uncertainty — not knowing what misfortune will come — makes people more unhappy than misfortune itself. Do you find that to be true?It does seem to be true of my own psychology. Also, I find that what’s most important, whatever happens, is how you deal with it. And once something bad actually happens, you can start that process, and bad can eventually even turn into good.
So how do we deal with the uncertainties of illness or life? Carl at A Pastor's Cancer Diary does a great job of describing the frustration (and eventual acceptance) of living with uncertainty, what Dr. Seuss called "the most useless place. The waiting place . . . "
For Carl and others, the operative word of "living with uncertainty" is living. And you don't need a spreadsheet for that.
(Leonard Mlodinow will be at Vroman's Bookstore in Pasadena on June 11. I'll be there.
5-25 Update: Oops. Mlodinow was at Vroman's in 2008. I'm only a year late. He's a local CalTech guy, so I hope I have another opportunity to hear him in person.)
Saturday, May 23, 2009
And sometimes it's about covering up the blight and creating something beautiful in the process. Read more about it at Open Mouth, Insert Fork.
Thursday, May 21, 2009
At least my frequent visits have reminded me of a few of the many things for which I'm grateful.
I'm a celebrity: Well, not really, but my doctor and all the staff treat me like one. I thought about this when I watched Farrah's Story and saw my doctor consulting with real-life celebrities Farrah Fawcett and Ryan O'Neal. All of us City of Hope patients get treated with the same level of care and compassion as a star. And we don't have to put up with the paparazzi.
I have enviable physical assets: Forgive me for bragging, but I have great veins. They are so outstanding that phlebotomists (blood takers) and nurses almost always comment on them. When I went in for my CT scan yesterday, the nurse said he didn't even need a tourniquet to pump my vein before the insertion of the IV. I'm an easy target and an easy blood draw and rarely feel a thing.
I wonder if Blood (a magzine for hematologists) would be interested in a center fold?
I'm covered: Cancer and serioius illnesses can be financially devastating, with or without insurance. (Mike C knows a thing or two about this.) In my case, all of my sky-high medical expenses (except for our annual deductible) have been completely covered. Not a day goes by that I don't thank God for this.
I'm surrounded: Loving, supportive, positive people are all around me, nearby and around the world. How about a giant group hug?
What about you? What are you grateful for these days?
(And, in case you're interested, those darn EOS went UP AGAIN. I am NOT thankful for that.)
Monday, May 18, 2009
At the risk of inducing naps, I found out something surprising during today's visit at the City of Hope. We have been regularly checking my white blood for eosinophils (EOS), and, of course, expect to find nothing. After all, I've been on a high dose of Prednisone (60 mg.), a steroid that efficiently annihilates EOS.
But, for some unknown reason, mine are on the rise again. Last Monday, EOS made up 10% of my white blood, when it should have been nada. How can this be? My suspicion is that those same EOS have crept into my lungs. I'm scheduled for a CT scan and pulmonary testing on Wednesday and a consultation with my pulmonologist on Thursday. I'm voting for a diagnostic bronchoscopy so that we can get to the bottom of this.
Friday, May 15, 2009
No need for long-winded explanations or that snooze-inducing word, eosinophils. If you think that coughing turns you into a social pariah, try dropping the word "eosinophils" into a conversation at a cocktail party. Eyes will glaze over. Heads will nod off to sleep. Gin and tonics will need to be refreshed. Long-lost friends from across the room will suddenly appear.
But, at the risk of putting all the new Cancer Banter followers into slumber mode, I don't think I have pneumonia. I believe that the cloudy x-ray with the infiltrates and the shortness of breath and the coughing and the fatigue are the work of those pesky little eosinophils. The prednisone has battered them down in my white blood, but I think they may have infiltrated my lungs.
My doctor, a hematologist, disagrees with me. He thinks that it's a simple case of pneumonia and that the antibiotics will have me healthy again in no time. I hope he's right.
I just saw my doctor on Farrah's Story, the Farrah Fawcett documentary of her struggles with cancer. He's shown at the City of Hope in a consultation with Farrah and her long-time love Ryan O'Neal. Now that's a love story.
But hematologists have nothing over Farrah and Ryan in the romance department. Don't forget that the "Eos" in eosinophils is from the Greek Goddess of the Dawn. And the "phils" is from the Greek word for love. As a matter of fact, two other components of the white blood end in love: neutrophils and basophils.
What's that you say? You need to refresh your gin and tonic? Alright then.
Tuesday, May 12, 2009
But it turns out that my life has also been slowly contracting for the last 11 days. With a hacking cough that has turned me into a social pariah, I found myself making and breaking dates and staying home more. On top of the cough, I was short of breath from the smallest activity, like walking across a room. Add in fatigue (in spite of a healthy, daily dose of 60 mg of Prednisone), and I was very content to be housebound.
I can't believe this was the same person who, just 12 days earlier, drove solo like an old-fashioned Dad (straight without stopping) from SF to LA and then, in response to a text message, met a friend at an improv club in Hollywood on the way home.
Tonight I received an email from my doctor with the results of the chest x-ray that I had yesterday at the City of Hope. I have infiltrates in my lungs, which means I have something that looks like pneumonia. At least we'll be treating it like pneumonia. Here we go again. (By the way, I'm one of the luckiest patients. My doctor emailed me with the results of my x-ray and then called my pharmacy with the prescription for antibiotics after 8 pm.)
I'm always just a little relieved to find out that there's something amiss and that I'm not just becoming a lazy, out-of-shape wimp.
Time to contract again. Just a little.
(Recommended blog: Running for my Life: Fighting Cancer One Step at a Time. Runner and writer Ronni's life has taken more twists and turns, ups and downs than the Dow Jones, but she always comes back, one step at a time. She is currently recovering from her THIRD donor stem cell transplant. I love her observations, insights, humor and spirit. When she describes getting platelets or going through a pulmonary function test, you're right in the chamber with her.)
Sunday, May 10, 2009
And then there's the every-day kind of "crazy." It's up for debate who said it first, but craziness (or insanity) is often defined as doing the same thing over and over again and expecting different results.
I discovered that's exactly what I was doing in the garden while trying to grow a crazy little herb called mint. You can read the full story at Open Mouth, Insert Fork.
Thursday, May 7, 2009
Cancer or any serious illness can contract your life. Heck, even a bad cold can reduce your daily existence to a box of Kleenex, a bottle of Nyquil and a remote control.
What I didn't realize is that, sometimes, cancer can also expand your life in unexpected ways. I won't even attempt to name all the people (both online and offline) who have made my life richer. Today I'm going to talk about one of those people.
I met Bill Kavanaugh through his blog, Lymph Notes, and was instantly smitten. Who wouldn't be after reading about how Bill's (or Baby Billy Bird, as he refers to himself in the blog) friends dressed in costume when escorting him to his chemo sessions. Or how they painted his bald head like an Easter egg. Or how he spent the day at the Happiest Place on Earth. Or his poignant response to the repeal on gay marriage.
We met in person a few months ago and instantly hit it off, even though we're complete opposites. He had Hodgkins Lymphoma; I had non-Hodgkins.
But we're alike in one fundamental way: We both like to do good while having fun.
That's why I immediately said "YES!" when Bill asked me to be a co-captain for the American Cancer Society's Relay for Life in Pasadena on May 30 and 31. (Click here for the complete schedule.)
Our theme is "Mutts for Marrow," and we're going to raise awareness of the need for mutts and minorities on the National Bone Marrow Registry while we raise money for cancer research and support.
Do you like to do good and have fun too? Sign up to walk with us. You can come for an hour or the day. I'll be making sugar-bone cookies as doggie treats, we'll be taking photos by the dog house and we'll share a pot-luck dinner on Saturday evening before the Luminaria. Yes, we'll have a doggone good time.
And, if you can't make it, maybe you'll throw us a little bone. I usually like to support smaller charities (like A3M) insted of mega organizations like the American Cancer Society, but when I found out that they provide free transportation for cancer patients here in the Pasadena area, I felt like I was seeing a more direct connection between my dollars and the local benefits.
I promise: Whether you walk or give, it will be a life-expanding experience.
Sunday, May 3, 2009
I no longer have eosinophils in my blood, but the coughing has become progressively worse over the last week. I don't know why.
I do know that I am, once again, a social pariah. With the heightened anxiety over swine flu, the public reaction is far worse than last year.
Yesterday, I had two different cashiers ask me, "Are you sick?" in an accusatory fashion. "Yes, I guess I am, but I'm not contagious," I answered. Or maybe I should have just said, "No, but I just have this annoying cough." Or maybe I should have asked, "What happened to 'Have a nice day.'"
This evening, I couldn't stop coughing during the WriteGirl PlayWriteGirl Event at the Pasadena Playhouse. Teen girls wrote monologues and short skits during a day-long workshop, and professional actors from film and television brought their words to life. Before the show started, I offered a preemptive apology and explanation to the woman sitting next to me.
Once the show started, I tried to stifle my coughs and let them erupt during clapping. And I was fastidious about covering my mouth with both hands.
I noticed that each time I coughed, the elderly lady sitting in front of me moved her program to her left ear. The first time, I thought it was a coincidence. Then she did it again and again. Soon, she wasn't moving the program from her ear. This passive-aggressive act made me so intensely uncomfortable that I apologized to my friend and left before the program was over. (Of course, that meant climbing over a dozen legs and then hopping over a chair to make my escape.)
I'm thinking of getting a few buttons printed:
- I do not have swine flu.
- Ask me about my EOS.
- Cough 'til you drop
- No thank you, I do not want a cough drop.
- I'm sorry.
The challenge got me thinking about stinky wild ramps and . . . possibilities. Find out how at Open Mouth, Insert Fork.
Thursday, April 30, 2009
And if "monoclonal antibody" rings a bell, it could be because I've written about another miracle drug in the same category. Rituxan (aka Susan's relapse prevention), the quarterly maintenance drug I take through an IV, is in the same drug class.
At age 36, and without a family history of cancer, Megan was diagnosed with an aggressive form of breast cancer that had already spread to her liver, brain, and bone. Everyone was shocked.
Treatments began immediately, and chemotherapy and targeted therapy have started to shrink her tumors. Everywhere, that is, except for in her brain. When her doctor prescribed additional, cutting-edge treatments that could eliminate the brain tumors and prevent new growth, her insurance company, California Blue Shield, denied coverage.
She appealed, but the insurance company is still in denial. Megan has elected to receive the treatment, with or without the insurance payments, and her family and friends are trying to raise $100,000 in 100 days to cover the costs.
I received the following email from City of Hope research scientist Dr. Susan Kane:
You might know Megan Jones from political or city circles. What you might not know is that she has been diagnosed with an aggressive form of and is currently undergoing costly therapy. Please go to http://megansfund.chipin.com/megans-fund and consider making a donation. As a , I know that Tykerb is a cutting-edge therapy that holds great promise for the treatment of breast cancer. Megan is a young, energetic and caring individual. Let’s help her fight the fight of her life.Cancer isn't fair. Insurance companies aren't fair. I hope you'll consider leveling the playing field a little by either making a donation or spreading the word about Megan.
Saturday, April 25, 2009
Friday, April 24, 2009
I joined "Team Krissy" at a bone marrow drive at Cal State Long Beach on Wednesday afternoon. It was exciting to see how the volunteer team works tirelessly to sign up minorities and mixes (and even European whites) for A3M and the National Bone Marrow Registry. We're hoping that one of our new recruits will be the match for Krissy Kobata, a 26-year-old Hapa who needs a bone marrow transplant.
This is the way we swab our cheeks. One Long Beach student works four swabs at the same time. The girls take a more traditional, one-swab-at-a-time approach.
Tonight, I'm going to the Mixed and Matched Concert and Bone Marrow Drive at USC and will, once again, join Team Krissy and A3M in recruiting potential donors for the Registry. Hapa Athena Misa's PSA about the need for multi-racial donors will be shown at tonight's event. You can view it here. (Krissy and I are interviewed in the clip. Just don't make fun of my bad-hair day.)
Finally, my new friend Bill and I are co-captains for the Pasadena Relay for Life for the American Cancer Society on May 30-31. Our theme is "Mutts for Marrow," and, once again, our goal is to draw attention to the need to sign up minorities and mixes for the Registry. You don't have to be a mutt or a minority to join us for an hour or for 24 hours during the Relay. And, if you sign up, I may even let you borrow my dog bone tiara.
Tuesday, April 21, 2009
He'll review a year's worth of my blood charts and my doctor's notes before our appointment next Monday. I'm eager to find out his conclusions and recommendations for a course of action.
I want to get away from the watch, wait, react mode.
In the mantime, I'm still enjoying the extra boost of Prednisone-fueled energy, I'm eating like a horse and I'm not gaining or losing weight. All good things.
Tuesday, April 14, 2009
I'm back on the infamous "booty or bust" tour and, on a quest for calories, I decided to check out Polkatots Cupcakes. Go ahead. Take a sample at Open Mouth, Insert Fork.
After my near-sleepless but productive Sunday night, I had looked forward to continuing my writing streak. The marketing plan for a non-fiction book. A scene from my much-talked-about (by me) one-woman show. The grocery list. (Hey, with the way I have to eat these days, that's like writing a novella.)
It's probably just as well that I slept through the night. Trish had cautioned me about the possible perils of writing while on a jittery, steroid-induced high. Who knows what edgy, raw drivel I was churning out. But then the jerky wheels began to turn and I thought, "What if I create a flash fiction anthology blog for 'roid writers?"
I'd get submissions from eosinophil sufferers, asthmatics and arthritics, not to mention post-transplant patients. (No ball players; that's a different kind of steroid.) Was I on to something?
No, that just seemed a little too narrow. What if I opened up submissions to all insomniacs? I could call the blog the Night Writers instead of the 'Roid Writers.
Who isn't sleeping these days? The grieving. The lonely hearts. Parents of infants. Parents of teens. Any woman over 50.
And, of course, the crummy economy has been responsible for keeping countless eyes wide open in the middle of the night. A recent story in the LA Times about the growing use of sleeping pills ended with this line from a sleepless college student, "I'm stressed out about the rest of my life."
So, I guess the better question would be, "Who IS sleeping these days?"
Um, that would be me. Even with the 'roids.