Wednesday, May 30, 2007
No Admittance
I was scheduled to check in to Hotel Hope yesterday for round four. But before checking in, I had one last blood draw and meeting with Dr. Forman to make sure that my blood counts had risen to acceptable levels. They had not, so my admittance has been postponed until next week.
You’d think that someone would be happy to know that they’re free to return home instead of checking in to the hospital, but I wasn’t.
First of all, I didn’t realize how much emotional and mental “psyching up” I do before checking in. I was pumped and ready to go, so it was a tremendous letdown.
And, as Dr. Forman knows and demonstrated by intertwining his fingers, my chemo calendar and personal calendar are closely linked. Throw off the schedule by a week and it’s like a house of cards that threatens to come tumbling down.
I look at my blood count spreadsheet and the line charts I created. The last line, which represents round three, is an erratic, misbehaving zig. The data and graphing were supposed to give my life control and predictability, but I knew all along that it was just the allusion of those things. The only thing that I can count on is that the chemo will decimate my blood counts.
The good news is that I’m feeling physically and emotionally better than ever, in spite of the low blood counts. So now I have an extra week to enjoy feeling good before checking in and, believe me, I plan to make the most of it.
Saturday, May 26, 2007
Plenty to Smile About
One True Thing
I imagine sometimes that the talk among cancer patients and penitentiary inmates isn't much different.
"Whatcha' in for?" (What's your diagnosis?)
"How long ya' been servin'?" (When did you get your diagnosis?)
"Whatcha' doin' now?" (What treatment are you receiving?)
"Whatcha' doin' later?" (What treatments are scheduled for the future?)
I've had many different versions of this same conversation since I became a patient at the City of Hope. But for more in-depth conversation, I've discovered that you must head straight for the transfusion/infusion room - the social hub of the hematology department.
Imagine a half-dozen streamlined Lazy-Boy recliners lined up side by side. Each one has its own television equipped with cable access and headphones, but I've seldom seen one turned on. Patients, who are captive audiences for multi-hour transfusions or infusions, jump (or recline) at the chance to talk with other patients.
When I went in for a hemoglobin (not the anticipated platelet) transfusion yesterday, I met Joel, a 37-year-old recently diagnosed with leukemia, in a nearby reclining chair.
His wife soon joined him and launched into such a thorough script critique of "Studio 60" that I assumed she was a writer for the show. (For non-So. Cal. readers, you can't drop a pencil in this town without it rolling under someone in the entertainment industry.) It turns out that she's not in "the biz." She and her husband just aren't afraid to admit that they're television fans, especially since Joel has had to endure six-week stretches as an in-patient since he was diagnosed in January.
For the next 30 minutes, we talked television. We lamented how characters on Grey's Anatomy and Desperate Housewives diagnosed with leukemia and Hodgkin’s Lymphoma are depriving us of the "escapism" value of our favorite shows. We ragged on Martha and her "poor cancer" attitude. We compared notes about nurses and concluded that the most well meaning but irritating ones were what Joel called the "Teletubbies" with their chirpy, high-pitched voices. A nurse chimed in about the irony of the “Food Network” playing endlessly in the rooms of the nauseous, upchucking patients in the bone marrow transplant wing.
Before long, John, a multiple-myeloma patient who I’ve seen many times at CoH, joined the group and the conversation. By coincidence, he's as short and round and good-natured as a Teletubby.
By the time Joel was finished with his transfusion, we had learned that he's the father of three boys (ages 8, 5 and 2); has a mother-in-law who took a leave of absence from her job and moved in to help as soon as he received his diagnosis; and that he's scheduled for a donor bone marrow transplant on June 13.
As Joel and his wife left the transfusion room, the nurses and we patients shouted together, "Good luck!" I know we all hoped the same thing. That our wish didn't sound either too lame or too "Teletubbish." That Joel knew that it was shorthand for our admiration for his spirit, for smooth sailing through what we all know is a rough journey ahead, for strength for his wife and family, for remission after the transplant.
After Joel left, the conversation suddenly turned to horse racing and Santa Anita. John (the one with multiple myeloma) and his 20-something daughter lit up when she explained that she’s betting on “One True Thing” just so that she can have the ticket for a souvenir. It turns out that her dad’s the owner and they're both looking forward to the mare running on Memorial Day.
We continued the obligatory “inmate” questions (John is also preparing for a stem cell transplant) before his infusion was complete.
As he left, I shouted out, “Good luck with ‘One True Thing.’”
“Thanks,” he said and then turned and reminded us, “Yes, at this point, it is all about luck, isn’t it?"
"Whatcha' in for?" (What's your diagnosis?)
"How long ya' been servin'?" (When did you get your diagnosis?)
"Whatcha' doin' now?" (What treatment are you receiving?)
"Whatcha' doin' later?" (What treatments are scheduled for the future?)
I've had many different versions of this same conversation since I became a patient at the City of Hope. But for more in-depth conversation, I've discovered that you must head straight for the transfusion/infusion room - the social hub of the hematology department.
Imagine a half-dozen streamlined Lazy-Boy recliners lined up side by side. Each one has its own television equipped with cable access and headphones, but I've seldom seen one turned on. Patients, who are captive audiences for multi-hour transfusions or infusions, jump (or recline) at the chance to talk with other patients.
When I went in for a hemoglobin (not the anticipated platelet) transfusion yesterday, I met Joel, a 37-year-old recently diagnosed with leukemia, in a nearby reclining chair.
His wife soon joined him and launched into such a thorough script critique of "Studio 60" that I assumed she was a writer for the show. (For non-So. Cal. readers, you can't drop a pencil in this town without it rolling under someone in the entertainment industry.) It turns out that she's not in "the biz." She and her husband just aren't afraid to admit that they're television fans, especially since Joel has had to endure six-week stretches as an in-patient since he was diagnosed in January.
For the next 30 minutes, we talked television. We lamented how characters on Grey's Anatomy and Desperate Housewives diagnosed with leukemia and Hodgkin’s Lymphoma are depriving us of the "escapism" value of our favorite shows. We ragged on Martha and her "poor cancer" attitude. We compared notes about nurses and concluded that the most well meaning but irritating ones were what Joel called the "Teletubbies" with their chirpy, high-pitched voices. A nurse chimed in about the irony of the “Food Network” playing endlessly in the rooms of the nauseous, upchucking patients in the bone marrow transplant wing.
Before long, John, a multiple-myeloma patient who I’ve seen many times at CoH, joined the group and the conversation. By coincidence, he's as short and round and good-natured as a Teletubby.
By the time Joel was finished with his transfusion, we had learned that he's the father of three boys (ages 8, 5 and 2); has a mother-in-law who took a leave of absence from her job and moved in to help as soon as he received his diagnosis; and that he's scheduled for a donor bone marrow transplant on June 13.
As Joel and his wife left the transfusion room, the nurses and we patients shouted together, "Good luck!" I know we all hoped the same thing. That our wish didn't sound either too lame or too "Teletubbish." That Joel knew that it was shorthand for our admiration for his spirit, for smooth sailing through what we all know is a rough journey ahead, for strength for his wife and family, for remission after the transplant.
After Joel left, the conversation suddenly turned to horse racing and Santa Anita. John (the one with multiple myeloma) and his 20-something daughter lit up when she explained that she’s betting on “One True Thing” just so that she can have the ticket for a souvenir. It turns out that her dad’s the owner and they're both looking forward to the mare running on Memorial Day.
We continued the obligatory “inmate” questions (John is also preparing for a stem cell transplant) before his infusion was complete.
As he left, I shouted out, “Good luck with ‘One True Thing.’”
“Thanks,” he said and then turned and reminded us, “Yes, at this point, it is all about luck, isn’t it?"
Thursday, May 24, 2007
Headlines from the Home Front
Cindy Carrier to Earn High School Diploma: It's official! Yesterday we received a message from the head of the school informing us that Cindy has completed all of the requirements for graduation and will march with her class this evening. Let the celebration begin!
Niece and Great Nephew Postpone Visit: At the last minute, my four-month-old great nephew Will became ill, so Emily wasn't able to fly out from Atlanta this week. At this point, a sick baby presents a double whammy: the challenge of airplane travel and the threat of my compromised white blood system. I'll just have to wait until "Big Will" is a little bigger before I hold him for the firs time.
Barbie and Ken Visit from Seattle Area: We're enjoying a brief visit with George's sister and brother-in-law. (The names have been changed to protect cyber privacy.)
Blood Levels Need to Rise: As always, before I can check in for the next round of in-patient chemo treatments, my blood levels need to reach specific levels. If the platelet count doesn't naturally rise by tomorrow, I'll be knocking back a few "mai tais" tomorrow afternoon, courtesy of the City of Hope transfusion department.
Niece and Great Nephew Postpone Visit: At the last minute, my four-month-old great nephew Will became ill, so Emily wasn't able to fly out from Atlanta this week. At this point, a sick baby presents a double whammy: the challenge of airplane travel and the threat of my compromised white blood system. I'll just have to wait until "Big Will" is a little bigger before I hold him for the firs time.
Barbie and Ken Visit from Seattle Area: We're enjoying a brief visit with George's sister and brother-in-law. (The names have been changed to protect cyber privacy.)
Blood Levels Need to Rise: As always, before I can check in for the next round of in-patient chemo treatments, my blood levels need to reach specific levels. If the platelet count doesn't naturally rise by tomorrow, I'll be knocking back a few "mai tais" tomorrow afternoon, courtesy of the City of Hope transfusion department.
Wednesday, May 23, 2007
Stick to Pralines, Not Pity
On Tuesday, former Gucci designer Tom Ford made a guest appearance on the Martha Stewart Show and helped whip up a batch of pecan pralines.
Martha pointed out that the iconic designer is featured in the May 28 issue of New York Magazine. The article, Tom Ford After Sex, "explores who he is without all that libido to sell."
Martha pulled out a copy of the issue, but, much to her embarrassment, discovered that the cover was a group shot of 143 cancer survivors, ages four to 92. The dissonance between Gucci and cancer was too much for Martha to handle. She condescendingly patted the cover and sadly explained, "These poor people have cancer. I hope they get better soon."
I hope that Martha can take a break from decorating and dining long enough to read the cover story, Cancer: The Survivor Monologues, to gain some insight into the people she pities so much.
The riveting series of first person accounts highlights the "surreal emergencies, suppressed marital stresses, comforting superstitions, petty irritations, spontaneous epiphanies, and other moment-to-moment means by which cancer – the ultimate life-altering experience – goes about its business of altering lives.”
I think you'll find the piece more addictive than pecan pralines.
Martha pointed out that the iconic designer is featured in the May 28 issue of New York Magazine. The article, Tom Ford After Sex, "explores who he is without all that libido to sell."
Martha pulled out a copy of the issue, but, much to her embarrassment, discovered that the cover was a group shot of 143 cancer survivors, ages four to 92. The dissonance between Gucci and cancer was too much for Martha to handle. She condescendingly patted the cover and sadly explained, "These poor people have cancer. I hope they get better soon."
I hope that Martha can take a break from decorating and dining long enough to read the cover story, Cancer: The Survivor Monologues, to gain some insight into the people she pities so much.
The riveting series of first person accounts highlights the "surreal emergencies, suppressed marital stresses, comforting superstitions, petty irritations, spontaneous epiphanies, and other moment-to-moment means by which cancer – the ultimate life-altering experience – goes about its business of altering lives.”
I think you'll find the piece more addictive than pecan pralines.
Labels:
cancer,
Martha Stewart,
New York Magazine,
pecan pralines,
pity,
Tom Ford
Tuesday, May 22, 2007
Under worked and overjoyed
Hello!
It's Paula Johnson, your cancer correspondent, checking in to say I am thrilled that Susan has been able to blog so faithfully before, during and after her rounds of chemo.
I was ready to scrawl up-to-the minute progress reports in my brand spanking new, regulation reporter's notebook, and then race to my computer to hammer out the latest update for Cancer Banter.
I had even planned to occasionally yell "stop the presses!" just for dramatic effect. Maybe get one of those flak jackets you see journalists wearing when they report from a war zone.
But I haven't had to blog much on Susan's behalf, and that suits me fine. She's doing well, so I have more time to send earnest* emails to George suggesting that he and Cindy learn their way around a kitchen already. A little father/daughter teamwork at Dream Dinners perhaps?
*In this case, "earnest" is code for “vaguely threatening.” War is hell.
It's Paula Johnson, your cancer correspondent, checking in to say I am thrilled that Susan has been able to blog so faithfully before, during and after her rounds of chemo.
I was ready to scrawl up-to-the minute progress reports in my brand spanking new, regulation reporter's notebook, and then race to my computer to hammer out the latest update for Cancer Banter.
I had even planned to occasionally yell "stop the presses!" just for dramatic effect. Maybe get one of those flak jackets you see journalists wearing when they report from a war zone.
But I haven't had to blog much on Susan's behalf, and that suits me fine. She's doing well, so I have more time to send earnest* emails to George suggesting that he and Cindy learn their way around a kitchen already. A little father/daughter teamwork at Dream Dinners perhaps?
*In this case, "earnest" is code for “vaguely threatening.” War is hell.
Monday, May 21, 2007
Updates on the Updates
Eye, Eye, Matie : My light-sensitive right eye has steadily improved and checked out perfectly today with my ocular surgeon/opthamologist. I guess I won't have to practice my pirate imitation after all.
The Graduatie: Cindy rose to the challenge and turned in all of her overdue economics homework. She'll get to march on Thursday and will receive her diploma if she continues to keep on track with a project that's due this Wednesday.
Company's Comin' on Wednesday: George's sister and brother-in-law will be visiting from the Seattle area, and my favorite niece Emily and her four-month-old baby, Will, will be flying out from Atlanta. I'm looking forward to visiting with everyone, but I especially can't wait to see and hold my great nephew for the first time.
If you don't hear much from me in the next few days, it's because I'm enjoying time with family.
The Graduatie: Cindy rose to the challenge and turned in all of her overdue economics homework. She'll get to march on Thursday and will receive her diploma if she continues to keep on track with a project that's due this Wednesday.
Company's Comin' on Wednesday: George's sister and brother-in-law will be visiting from the Seattle area, and my favorite niece Emily and her four-month-old baby, Will, will be flying out from Atlanta. I'm looking forward to visiting with everyone, but I especially can't wait to see and hold my great nephew for the first time.
If you don't hear much from me in the next few days, it's because I'm enjoying time with family.
"A" is for Appetite
During chemo, my appetite falls off track faster than a 12th grader with senioritis.
I dutifully order the most nutritious items on the Hotel Hope menu, but a nearly full tray is whisked away hours later. And, I have to admit, that the possibility of the "second coming" (of the food, that is), is a powerful disincentive to chowing down.
The lousy appetite dogs me after my homecoming, but, like clockwork, it miraculously returns within 48 hours. After round one, the potato balls from Porto's Bakery reignited my taste buds. Pork and shrimp shumai from my favorite dumpling house did the trick after round two.
Two days after returning from round three, I offered to bring home pizza from Casa Bianca, a popular family-style Italian joint in Eagle Rock. My appetite hadn't returned yet, so I thought the large pizza pie sitting in the passenger's seat was safe. The aroma of the fennel-laced sausage hit me, and I thought, "Just one small square." But those tasty nibbles woke up my sleeping taste buds, and I couldn't stop myself. After consuming several more squares, I maneuvered the pieces around, hoping noone would notice that a fourth of the pizza was missing. (Unfortunately, I didn't fool anyone.)
Do you see a theme here? Carbs and fat are the perfect antidote to chemo-induced appetite loss. I'm already plotting a breakfast of old-fashioned, high-fat biscuits and sausage gravy to rev up my appetite after round four. Care to join me?
Sunday, May 20, 2007
Desperate Housewife?
At last, I have something in common with one of the ladies on Wisteria Lane. No, I don't have two men dueling for my hand in marriage, and I'm not faking a six-month pregnancy.
But I do have Lymphoma. Last week we learned that Lynette's swollen lymph nodes were lymphoma, and tonight we discover that it's the Hodgkin's variety, which she informs a family member is "the one you want to get."
Lynette's mom, a breast cancer survivor, moves in and informs her dazed daughter, "Prepare to be sicker than you can even imagine." Thank God chemo is less debilitating that it was 20+ years ago when Lynette's mom underwent treatment. I hope Lynette has it as easy as I have, but that probably wouldn't make very good drama.
I'm sure every So. Cal lymphoma patient or survivor is thinking the same thing: I should be a consultant on the show. The possibilties are endless. Imagine the girls bonding as they go "up in smoke" at a medical marijuana party.
But I do have Lymphoma. Last week we learned that Lynette's swollen lymph nodes were lymphoma, and tonight we discover that it's the Hodgkin's variety, which she informs a family member is "the one you want to get."
Lynette's mom, a breast cancer survivor, moves in and informs her dazed daughter, "Prepare to be sicker than you can even imagine." Thank God chemo is less debilitating that it was 20+ years ago when Lynette's mom underwent treatment. I hope Lynette has it as easy as I have, but that probably wouldn't make very good drama.
I'm sure every So. Cal lymphoma patient or survivor is thinking the same thing: I should be a consultant on the show. The possibilties are endless. Imagine the girls bonding as they go "up in smoke" at a medical marijuana party.
Friday, May 18, 2007
Updates from Home
I've decided that today is a hang-out-in-pajamas, catch-up-with-paper-work day. (Just not the monogrammed PJs I ordered for Mother's Day. Those are on back order.)
Since returning from Hotel Hope on Tuesday, I've been busier than expected. Here's a brief rundown of what's been going on:
The Future's So Bright, You Gotta' Wear an Eye Patch: My right eye has become so sensitive to light that, even when I'm wearing dark glasses, I squint or completely close the eye to protect it from rays. Dr. Forman is stumped, but I've made an appointment with the ocular surgeon/opthamologist who provided a second opinion prior to my initial tumor biopsy. He's a brilliant, Harvard Med School grad and a former director at the Doheny Eye Institute, but that's not what impressed me most. In addition to taking photos of my eye tumor, he snapped shots of my torso rash and concluded, "I think you're going to find that all of these symptoms are related." How right he was. I'm hoping that he has a solution that doesn't make me look like an extra from Pirates of the Caribbean.
PICC Your Battles: Every night, George flushes out the PICC (Peripherally Inserted Central Catheter) line with Heperan to clean out the line and prevent the blood from clotting. When he presses down on the Heperan vial and meets resistance, we know that the line is clogged. The last time this happened, a nurse had to remove the old tubing and insert a new PICC line in the opposite arm. This time, I went to the emergency center at CoH, where the nurses inserted a special "PICC Drano" to successfully unclog the line.
Letting Go: We were looking forward to Cindy's graduation from Arroyo Pacific Academy on May 24, but, as of today, we aren't sure if she'll be donning the cap and gown. She has failed to complete her economics homework, a requirement for graduation, and has until the end of the day today to turn in her many missing assignments. I'll keep you posted on the outcome. Needless to say, this has produced considerable stress, anger and disappointment, but I'm working on letting go. Easier said than done.
And, in case you're concerned that I've violated my daughter's privacy by making this information public, let me share a story that highlights the true nature of an 18-year-old who is unfazed by her actions. Her primary concern is that I not blog about the details of her recent visit to the dermatologist's office. (Mum's the word.)
Shower Power: I've also been busy planning a June baby shower for my future "god baby," due in July. Unlike other stressful events in my life, this one is a source of great joy.
Since returning from Hotel Hope on Tuesday, I've been busier than expected. Here's a brief rundown of what's been going on:
The Future's So Bright, You Gotta' Wear an Eye Patch: My right eye has become so sensitive to light that, even when I'm wearing dark glasses, I squint or completely close the eye to protect it from rays. Dr. Forman is stumped, but I've made an appointment with the ocular surgeon/opthamologist who provided a second opinion prior to my initial tumor biopsy. He's a brilliant, Harvard Med School grad and a former director at the Doheny Eye Institute, but that's not what impressed me most. In addition to taking photos of my eye tumor, he snapped shots of my torso rash and concluded, "I think you're going to find that all of these symptoms are related." How right he was. I'm hoping that he has a solution that doesn't make me look like an extra from Pirates of the Caribbean.
PICC Your Battles: Every night, George flushes out the PICC (Peripherally Inserted Central Catheter) line with Heperan to clean out the line and prevent the blood from clotting. When he presses down on the Heperan vial and meets resistance, we know that the line is clogged. The last time this happened, a nurse had to remove the old tubing and insert a new PICC line in the opposite arm. This time, I went to the emergency center at CoH, where the nurses inserted a special "PICC Drano" to successfully unclog the line.
Letting Go: We were looking forward to Cindy's graduation from Arroyo Pacific Academy on May 24, but, as of today, we aren't sure if she'll be donning the cap and gown. She has failed to complete her economics homework, a requirement for graduation, and has until the end of the day today to turn in her many missing assignments. I'll keep you posted on the outcome. Needless to say, this has produced considerable stress, anger and disappointment, but I'm working on letting go. Easier said than done.
And, in case you're concerned that I've violated my daughter's privacy by making this information public, let me share a story that highlights the true nature of an 18-year-old who is unfazed by her actions. Her primary concern is that I not blog about the details of her recent visit to the dermatologist's office. (Mum's the word.)
Shower Power: I've also been busy planning a June baby shower for my future "god baby," due in July. Unlike other stressful events in my life, this one is a source of great joy.
Tuesday, May 15, 2007
Running Nowhere
I had the running dream again last night.
In the BC days, when I had the running dream, someone or something was chasing me.
Now, I'm chasing something. It's not something concrete, like a bus to catch or a baby to save. I don't know what I'm after, but I can't get there fast enough. I run along the side of a picket fence and propel myself by pushing off the stakes, like a breast stroker, shoving back the water and then gliding.
I do it so that I can reach my unknown destination faster and save energy at the same time.
I'm exhausted now. Tonight, I don't want to dream of running. I just want to sleep.
In the BC days, when I had the running dream, someone or something was chasing me.
Now, I'm chasing something. It's not something concrete, like a bus to catch or a baby to save. I don't know what I'm after, but I can't get there fast enough. I run along the side of a picket fence and propel myself by pushing off the stakes, like a breast stroker, shoving back the water and then gliding.
I do it so that I can reach my unknown destination faster and save energy at the same time.
I'm exhausted now. Tonight, I don't want to dream of running. I just want to sleep.
Monday, May 14, 2007
A Tale of Two Lymphomas
For the past few weeks, I've been following the blog of another City of Hope lymphoma patient, 22-year old Jenna.
I felt a connection with her because she's a patient of Dr. Forman's and completed an autologous stem cell transplant (SCT) at the City of Hope in January. Her blog tells the story of her 28-day hospitalization, her rapid recovery, clean PET Scan, and trips to Spain and Mexico just weeks after the completion of her SCT. It's become my favorite bedtime story. ("Mommy, tell me the story about how Jenna has a stem cell transplant at the City of Hope and then drinks sangria in Spain and surfs in Mexico.")
Jenna's blog frequently requested that readers pray for her friend Alese, a 23-year-old woman with Hodgkins Lymphoma. I just checked Jenna's blog and was devastated to learn that Alese passed away two days ago.
After reading Alese's website, I feel small and insignificant. This bright and beautiful girl, diagnosed at age 17, endured an arduous, six-year, bi-coastal battle with Hodgkin's Lymphoma. Read Alese's website to learn how to live life, with or without cancer.
I felt a connection with her because she's a patient of Dr. Forman's and completed an autologous stem cell transplant (SCT) at the City of Hope in January. Her blog tells the story of her 28-day hospitalization, her rapid recovery, clean PET Scan, and trips to Spain and Mexico just weeks after the completion of her SCT. It's become my favorite bedtime story. ("Mommy, tell me the story about how Jenna has a stem cell transplant at the City of Hope and then drinks sangria in Spain and surfs in Mexico.")
Jenna's blog frequently requested that readers pray for her friend Alese, a 23-year-old woman with Hodgkins Lymphoma. I just checked Jenna's blog and was devastated to learn that Alese passed away two days ago.
After reading Alese's website, I feel small and insignificant. This bright and beautiful girl, diagnosed at age 17, endured an arduous, six-year, bi-coastal battle with Hodgkin's Lymphoma. Read Alese's website to learn how to live life, with or without cancer.
Sunday, May 13, 2007
Better, smarter, stronger
Is it possible to emerge from MCL better, stronger and smarter? And, more important, is it possible to get all of that on a bracelet?
Sometimes, I inch toward that goal, but on other days (like yesterday), I simply occupy a space in a hospital bed.
On good days, you can spot me pole dancing, doing my 30-minute, in-bed Pilates routine, or working with my Therabands in the hospital lobby.
Sometimes, I inch toward that goal, but on other days (like yesterday), I simply occupy a space in a hospital bed.
On good days, you can spot me pole dancing, doing my 30-minute, in-bed Pilates routine, or working with my Therabands in the hospital lobby.
Too Green for Words
Saturday, May 12, 2007
Pre-Prom Memories at the City of Hope
Friday, May 11, 2007
Different Moments Than I Imagined
Nearly two months ago, on March 13, I wrote these words on my blog:
"For the first time since visiting my general practitioner in early January, a feeling of overwhelming sadness and fear swept over me. Sadness for the things I'll miss in the next few months, especially related to Cindy."
Wise Rose left a comment that has resonated with me since that day: "You will not miss moments with Cynthia, or anyone else. You will just have different moments than you imagined."
Tonight was Cindy's Senior Prom at Arroyo Pacific Academy and I did, in fact, have different memories than I imagined. My friend Terry took the day off from work so she could pick up Cindy and shuttle her from hair salon to makeup artist to boyfriend pickup and home for dress up. All the while Terry played "clock Nazi," reminding stylists and make-up artists and, most of all, Cindy, of the tight time frame involved in making an appearance at the City of Hope before taking off for official prom photos.
I sat perched in my hospital bed intercepting calls and orchestrating the details. "Who's picking up the corsages? I'll call George."
At 5:30 pm, Cindy, Andrew and Terry waltzed through the sun-filled lobby at the City of Hope. George arrived a few minutes later with corsages in tow. A helpful patient care assistant produced some safety pins and helped with the final underpinnings of Cindy's garment.
We took photos of the glowing young couple, decked out in their prom finery. The "totem pole" and I even joined in for a couple portraits.
George rushed to drop off the couple for prom portraits at the Brookside Country Club while Terry and I relaxed in the room replaying the highs and lows of the day.
My recollections of Rose's prom preparation memories consist of Amber and a friend quietly dressing in her room while moms sipped wine in the kitchen. I had hoped to conjure up the same easy-going scene, but, just as Rose predicted, I produced a much different one than I imagined. It's certainly one that none of us will forget.
I don't have a bottle of champagne tonight, but, if I did, I would raise my glass to my friends Rose and Terry, my husband George, my beautiful daughter Cindy and her dashing boyfriend Andrew.
PS I'll post more photos tomorrow.
Commentors: Do you have any favorite (publishable) prom memories of your own or your child's prom?
Wednesday, May 9, 2007
Back at Hotel Hope for Round Three
Breakfast in bed. Round-the-clock room service. A staff at my beck and call. Unlimited recreational opportunities, including pole dancing, conga line dancing and cable television. Daily in-room "happy hour." A room with a view (of the 210 freeway).
Today I'll check in to one of the five-star resorts of the San Gabriel Valley, Hotel Hope.
I'll check out on Sunday, just in time to celebrate Mother's Day with George and Cindy.
UPDATE: It's 2:15 pm and I'm settled into my room. This time I have a view of palm trees and the mountains, so it seems more "resort-like" than ever.
Today I'll check in to one of the five-star resorts of the San Gabriel Valley, Hotel Hope.
I'll check out on Sunday, just in time to celebrate Mother's Day with George and Cindy.
UPDATE: It's 2:15 pm and I'm settled into my room. This time I have a view of palm trees and the mountains, so it seems more "resort-like" than ever.
Monday, May 7, 2007
Loved Ones Recall Local Man's Cowardly Battle With Cancer
Did you laugh out loud when you read this headline from the satirical newspaper, The Onion? I did.
Why is it that the use of the words "cowardly" and "cancer" in the same sentence tickles our funny bones? Comedy critics would tell us that it's the surprise factor or incongruous pairing that produces the chuckles. We expect cancer battlers to be strong and courageous, not weak and cowardly.
All of this has inspired me to think about why most of us naturally ascribe these adjectives, strong and courageous, to those battling cancer. Over the decades, I've known many friends and acquaintances (several of whom have died from the disease) who battled cancer. Each did it in his or her own way, but in every case I would describe the person and their battle as strong and courageous.
And, yet, most of us who are currently in the trenches feel uncomfortable with these descriptors. Jonathan Alter, in his Newsweek cover story about his battle with mantle cell lymphoma, described it this way. “Friends later said I handled it courageously, but they were wrong. American culture rewards cheerful stoicism, a quality that cancer patients usually display in public but find difficult to sustain in private.”
I often think of Alter's words when I find myself crushed with emotions that are contrary to the "cheerful stoicism" I usually display and genuinely feel. After my last release from the City of Hope, I was required to report back on the following day at 8:30 am. I was exhausted. I was dealing with the loss of my hair. My body was covered with unhealed sores, a cheetah-like rash and bruises. My lower legs looked like they were decorated in dots with a red, fine-point Sharpie. (I later learned that this is a hallmark of a low blood platelet count.) I was hideous. As I burst into tears while walking from the parking lot to the hospital, I thought, "I'm NOT strong and courageous. I'm weak and cowardly."
The truth is that I was a person in need of support, a hug, encouraging words, and I got all of those things as soon as I walked through the doors of Hope. And I got it later when I talked with friends who had experienced a similar ride on the cancer coaster.
One definition of "courageous" is "consciously rising to a specific test by drawing on a reserve of inner strength." I like this definition because the implication is that the corageous person doesn't know the reserve existed prior to the "test." When I admire someone else for being "strong and courageous," my unspoken questions are always, "Could I rise to the occasion if the same thing happened to me?" and "Do I have the necessary reserve of inner strength?"
I find myself asking these questions a lot these days. Whenever I see a mom with a young child with leukemia. After I chat with patients whose primary residences are out of state and they are taking up temporary residence in So. Cal. while undergoing treatment at CoH. When I make contact with someone who has undergone more than one bone marrow or stem cell transplant. When I talk with someone whose disease has come back after being in remission.
I ask myself these questions every time I think of my friend Wayne, a 65-year-old college math professor, who biked daily from Altadena to LA. After a freak cycling accident in February, he is a quadriplegic. This formerly physical and mental athlete is just now beginning to regain feeling and movement in the tips of his fingers. When I spoke with him two weeks ago, he, like Christopher Reeve, was quick to point out, "I'm still Wayne."
There's no doubt that Wayne epitomizes strength and courage. Could I be as courageous under the same circumstances?
Wayne’s life changed dramatically from one moment to the next with no time to mentally or physically prepare. Mine, on the other hand, has been a gradual adjustment. When my ocular surgeon told me that the tumor on my eye was mantle cell lymphoma, he added that I would most likely be treated with radiation therapy. I thought, "I can deal with radiation, but I don't think I can handle chemo." The next thing I knew, my hematologist told me that I would be undergoing chemo and I thought, "Once every three weeks. That's not so bad. I can handle that." In the end, doctors told me, "You must undergo a high-dosage treatment as an in-patient and you will have a stem cell transplant when it's all over."
By the time I heard these words, I was ready to digest them. If I had heard them right after the initial diagnosis, I doubt that I would have been able to "consciously tap into reserves of strength" as quickly.
When we were going through our turbulent years with Cindy, I was active on a listserve for parents whose children attended the same group of "emotional growth" boarding schools. Parents sometimes posted chilling stories about children who ran away from the programs, which were typically located in rural or mountainous areas. At the time, I thought, "I don't think I have the strength to handle it if Cindy ran away." Two years later, she did just that from a program in Utah. And, of course, I did handle it; I had no choice. It was an excruciatingly difficult time, but we all got through that and other crises, thanks in no small part to others who had been on or were traveling similar journeys.
I find myself wondering the same thing about cancer returning after being in remission - that dangling sword of Damocles that threatens every cancer patient and survivor. Naturally, I believe it when I tell myself that I'm gonna' kick this MCL to the ground so that it never comes back up again. But after Elizabeth Edwards' cancer returned, I heard a commentator state that our society puts tremendous pressure on cancer survivors to do just that. The reality is that cancer sometimes returns, regardless of the treatments and the attitude of the patient.
In spite of my fears, I know deep down inside that I will deal with what I have to deal with when I have to deal with it, with the help of my family and friends. Sometimes I think the most courageous thing we can do is to admit that we have no (or a limited supply of) inner strength and seek out others, both professionally and personally, who can help us through these "tests."
And that, my friends, is no laughing matter.
Thursday, May 3, 2007
Oh, no! Here she comes.
Consider yourself warned.
In an effort to make sense of my blood results, corresponding energy/mood levels, relationship to Course A or B, response to Neulasta injections or transfusions, I've created an Excel spreadsheet.
It's a beautiful thing. I've used baby blue to highlight the counts that are within 10% below the low normal range. Counts that dip below the 10% mark are highlighted in warning yellow. The nadir, or lowest point, in blood counts, is indicated in red letters.
I just learned how to add comments (click on a date, and up pop the comments) so that I can correlate my energy level, moods and other symptoms (e.g. bloody nose) with blood counts. I've also added my own indicator, the "2FHR," my heart rate after ascending two flights of stairs.
At a glance, I can compare and contrast Course A and Course B. I immediately see that Course B is bathed in yellow, the warning color, while Course A basks in a less extreme baby blue. I learn that I reached my nadir for both courses on Day 13, and it's all uphill from there. From my anecdotal comments, it's clear that mood is a much more reliable indicator of my energy level than blood counts. (Another reason to PACE myself, in spite of how I feel.)
I can also use this data to plan my social calendar and schedule manicures. I can't take the risk of cutting cuticles with low white blood cells (risk of infection) or low platelets (risk of bleeding).
On the other hand, could a sudden dip in lunch dates and social engagements be in direct correlation to my desire to blather on about my spreadsheet?
I find all of this endlessly fascinating, but not everyone shares my zest. If you see me approaching with an Excel spreadsheet or a laptop computer, you may want to change directions. But, hey, if you really want to make me happy, just ask, "May I see your spreadsheet?"
Wednesday, May 2, 2007
Flora-Cani Yoga
Not so long ago, if I didn't sweat, raise my heart rate, burn some calories or flood my brain with endorphins, I wasn't interested in participating. The meditative quality of yoga made me crazy. Unable to clear my mind during class, I resorted to filling the blanks by making mental grocery lists or counting to 100, then 1,000, like an out-of-control obsessive compulsive.
Even then, I realized that the more you hated it, the more you probably needed it.
But that was back in the BC (before cancer) days. Now I look forward to my weekly session with Yoga Deb. She comes to our Altadena home and garden every Saturday morning for an hour of Kundalini yoga. Debbi describes this gentle yoga as "a spiritual garden, complete with breathing, postures, meditation, mantras, and deep relaxation, all designed to integrate the mind, body, and spirit."
As you can see from the photographs, our garden and canine Betty play a vital role in the yoga session. I know it's Kundalini, but I like to call it "Flora-Cani Yoga." I think it could catch on. Betty frolicks. Bees buzz. Lavender sways in the breeze. The fountain splashes. The sweet scent of David Austin roses wafts through the air. It's a doggone therapeutic environment.
If you're interested in joining us, contact Debbi through her website or email me privately, and I'll give you the details. Hope to see you at Flora-Cani!
AND after readng Karen's clever comment about "Flora-Candy Yoga," I have to ask: Please describe YOUR fantasy yoga class.
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