Sunday, December 30, 2007
My mind raced and, for the first time in years, I felt giddy about the new year. I've signed up for Terrie Silverman's Creative Rites classes, which begin January 10, and plan to start work on that one-woman show, "Big C, Little C." I'm ready to take on some marketing projects in the energy/water efficiency field. I've got some freelance writing projects in the works.
And after nearly a year of being the grateful recipient of abundant love, support and friendship that's been demonstrated in a thousand thoughtful ways, I'm giddy about the prospect of being able to give more than I receive this year.
The possibility of feeling good, doing good work and accomplishing good things is enough to make anyone feel giddy.
But every so often the giddiness is replaced with nervous butterflies in my stomach - the ones that flutter around and whisper, "What if you relapse?" "What if you eventually need a donor stem cell transplant?" "What if you develop myelodysplasia (the chemo-induced cancer that was a concern)?" Even writing about these "What ifs" makes me want to throw up, because, yes, they are in the realm of possibility.
I figure that two can play at the "what if" game. "What if I find an agent and a publisher for one of my book proposals?" "What if I publish an article in Dwell Magazine?" "What if I spend the entire year in remission?" "What if my blood counts continue to rise to normal levels?" These are also in the strong realm of possibility. (And instead of nervous butterflies, I get giddy thinking about these things.)
So what's it gonna' be? What if we ALL have a happy, healthy New Year?! I'll drink to that!
Thursday, December 27, 2007
WBC 2.9 (4.0-11)
RBC 2.62 (3.8-5.2)
HGB 8.9 (11.5-15.5)
PLT 24 (150-350)
Day 42, Thursday, December 27
WBC 4.3 (4.0-11)
RBC 2.54 (3.8-5.2)
HGB 8.6 (11.5-15.5)
PLT 47 (150-350)
I'm normal! Well, at least my white blood counts are in the normal range. I'm even healthy enough to board a plane and am planning a trip to SF next week.
My red blood and hemoglobin counts took another baby step back, but I'm still able to do a lot with a little.
The best news is that the platelets rose from 24 to 47 without the help of a transfusion. I can't tell you how happy I am to be in the platelet production business.
Since it looks as though I'm out of the transfusion woods, I'm scheduled to have the surgeon remove my Hickman catheter in two weeks. I'll be wireless for the first time in nine months.
Saturday, December 22, 2007
I caught myself doing it again the other day - in broad daylight and in public. I was muttering out loud.
If it's the season to be jolly, then why was I engaging in the mutter, er mother, of all social taboos? Simple: I went shopping at a big-box retailer two weeks before Christmas and less than two weeks after returning home from my auto stem cell transplant.
You see, I just had to buy two of the enormous wreaths that Costco sells for the unbelievable price of $4.98 each. My friend Carol and I filled our shared cart with a dozen or so items, checked out in record time and then strolled through the final gauntlet at the exit. That's where we hit our holiday snag. A sharp Costco employee discovered that I was charged for one, not two, of the wreaths. She sent me back to square one.
"I don't have to wait in the line again, do I?" I whined. "No. I'm going to send you to lane one. There's nobody there," she cheerfully responded.
She was right. There was nobody there - not even a cashier. I ran back to inform the cart checker and she told me to try again. I raced back and found that a cashier AND two other customers were now at lane one. The cashier sped through the first transaction, but she needed to go to another register to issue a credit for the second customer.
"No, no, you're not leaving me here, are you?" I pleaded like a preschooler to her mom on the first day of school. I begged her to take care of me first. "I have cash!" But before I could fling myself (and my cash) at her ankles, she was gone.
That's when the overt muttering began. "Why am I being punished for someone else's mistake?" "What's taking them so long?" On and on I went. The more I muttered, the unhappier I became.
One thing was certain: I had no reason to fear becoming one of those insufferable cancer survivors who reach an enlightened state of calm and serenity amidst the chaos of daily life.
OK - I admit it. I was hoping that I could be that insufferably patient patient. Or, at the very least, I wanted to be someone who knew when to take action and when to let go amidst the chaos of daily life. Muttering was not one of the options I had in mind.
I thought back to the time in Minneapolis just a few weeks ago when I was waiting for a shuttle bus from the airport to the hotel. After 30 minutes, I suggested to two other hotel guests that we share a cab and ask the hotel to reimburse us. The two business men from Australia placidly shrugged their shoulders.
Was I over-reacting? I decided to wait a few more minutes before calling the hotel. Their response: "We're having shuttle problems. Go ahead and take a cab and we'll reimburse you." Those easy-going Aussies might still be waiting if I hadn't taken action.
And I managed to wait for the cab without a single mutter under or over my breath.
Why wasn't I able to control my mad-woman muttering at Costco? The gentleman standing behind me looked at me knowingly, made a subtle "simmer down" gesture and then admitted, "I was just like you." Huh? He lifted up his cap to reveal a bald head while he nodded at my scalp-concealing hat.
"When I first got out of the hospital, I had no patience. You just have to tell yourself 'It's Costco' and let go.'" My friendly reminder went on to tell me that he was two months out from completing an auto stem cell transplant for multiple myeloma. "Me too. I'm two weeks out," I squealed with the joy I usually reserve for when I find out that my platelets have risen.
Before I knew it the cart checker had helped us round up another cashier and I was ready to go home and hang my wreaths.
Are my muttering days behind me? As a mutter of fact, probably not, but, I'm catching myself in the act and laughing out loud when it happens. I just hope the spontaneous laughter doesn't look as crazy as the muttering.
Friday, December 21, 2007
WBC 2.8 (4.0-11)
RBC 2.73 (3.8-5.2)
HGB 9.3 (11.5-15.5)
PLT 26 (150-350)
Day 35, Thursday, December 20
WBC 2.9 (4.0-11)
RBC 2.62 (3.8-5.2)
HGB 8.9 (11.5-15.5)
PLT 24 (150-350)
We're continuing on the same trend: the white blood cells are inching up while the red, hemoglobin and platelets are continuing to creep back. I didn't need a transfusion on Thursday as I'd predicted, but I'll no doubt need a platelet (and possibly a red blood) transfusion when I return next Thursday. As usual, I don't feel any correlation between low hemoglobin and fatigue levels.
And I continue to feel stronger, both mentally and physically, every day.
Otherwise, my life for the moment seems blissfully boring, and I'm not complaining one bit!
Thursday, December 20, 2007
Thanks to the good folks at Duke's Mayonnaise, I have four jumbo-size jars of the decadent condiment to give away as contest prizes.
The two readers who answer the most questions correctly will win a jar of the stuff that's guaranteed to make your BLTs unforgettable.
- Do not post your answers in the comments section. Email them to susancarrier@sbcglobalnet.
- Answers to all questions can be found at www.cancerbanter.blogspot.com.
- Family members are eligible.
- In the event that more than two people achieve the same score, I'll issue a tie-breaker question.
- If you live in a state that sells Duke's Mayo, you will not receive Duke's as your prize. (Let's face it - it's cheaper for you to go down to the local Piggly Wiggly than it is for me to box and ship it to you.) Instead, I'll substitute something that's not available at your local market.
- Contest ends on Wednesday, January 2.
- What kind of mayo does Susan like on her BLTs?
- What kind of lettuce does she use on her BLTs?
- What is Susan’s favorite breakfast in So. Cal?
- What is Susan’s favorite breakfast in West Virginia?
- What did cousin Nathan and his wife Francis serve for lunch during Susan’s visit to West Virginia?
- What savory treat reignited Susan’s taste buds after her first visit to Hotel Hope?
- When Susan gets a craving for Vietnamese egg rolls, where does she head?
- Where does Susan go for her favorite iced tea addiction? What flavor?
- Name six fruits that grow in Susan’s back yard.
- Name an unusual hot dog accompaniment In West Virginia.
- What forbidden post-transplant food did the transplant expert from the University of Minnesota forget to mention?
- What is Susan’s (and the Carrier family’s) favorite place for pizza?
- Name two foods that Susan ordered for breakfast at Hotel Hope.
- Who is Susan’s favorite food writer?
- Name a Culver City food emporium where Susan has recently shopped.
Monday, December 17, 2007
Wayne recently received a visit from a mutual friend who brought a copy of an essay I wrote for the LA Times way back in 1993. Wayne and his family were the hosts of the Christmas party that inspired the essay.
In his email, Wayne wrote, "Both of our Christmases are a bit different than a year ago, don't you think?" One thing's for sure - they'll be memorable for both of us.
Here's the story that first appeared in the LA Times in December 1993, shortly after I segued from my career as "full-time mom" to "writer."
(And, while we're at it, how about if you share a "happy memory from a Christmas or holiday past.")
Memories of Christmas Stuffed with Joy
"Bring a happy memory from a Christmas past," instructed the invitation to the Bishops' annual Christmas party.
I searched my memory for a splashy story that would impress the other party guests, but my mind kept coming back to the one thing I loved best about Christmas: tramping out with my grandmother to her woods to select and chop down the tree. We always returned home with the scrawniest "Charlie Brown Christmas" tree we could find, threw cotton balls at its sagging branches, hung candy canes on its tired limbs and declared it the most beautiful tree ever.
My husband's favorite memory was just as simple. George recalled that when he was very young his mother created her own Christmas ornaments. She cut out used Christmas cards, taped aluminum foil to the back of each cutout, and then strung the homemade ornaments from the ceiling and on the trees. George was in awe of these beautiful creations.
We were both surprised to learn that our favorite memories were not elaborate, but evocative of a simpler time in our lives when money wasn't a necessity for creating a special memory. Most of the memories shared by guests at the Bishops' party carried the same theme.
"Mom, tell the story about the orange," was a familiar chant in the home of Dean Kieffaber when he was growing up. He and his four siblings begged their mom to retell the story of her favorite (and only) childhood Christmas present, a perfect piece of fruit. The children thought it was wildly funny that their mom could cherish the memory of an orange. They loved to picture her savoring each bit of the luscious fruit until the last sticky morsel was nothing but a memory.
"I was just talking to an older gentleman who had an orange story, too," chimed in another guest. Unlike Dean's mom, who actually enjoyed consuming the orange, this gentleman couldn't bear to part with his prized possession. He kept the orange, admiring it each day, until it shriveled into nothing.
Barbara Friend fondly recalls the Christmas when she and her husband could not afford a tree or gifts. She gathered pine branches after a wind storm and tied them together. For presents, she wrapped borrowed library books and lovingly placed them under her makeshift tree.
Jim McClendon loves the childhood memory of his father taking him to the fireplace to make sure that the flue was open wide enough to accommodate Santa.
While listening to these stories, I realized that ingenuity and sharing, not expensive gifts and gala Christmas fetes, were the common threads that wove special memories.
I couldn't help wondering what special Christmas memories our 4-year old daughter, Cynthia, will cherish as an adult. Conscious of my somewhat humble upbringing in a small town in West Virginia, I often find myself overcompensating. In an attempt to create special Christmas memories for Cynthia, I have orchestrated elaborate parties, accompanied her to lavish productions of "The Nutcracker," and taken her to the Christmas breakfast at Bullocks, a childhood extravaganza complete with Santa, life-size dolls and teddy bears working the room, festive decorations, and a puppet show.
My den has quickly filled with not one, but dozens of presents, in hopes that one will be the prized gift she cherished forever.
I am soon exhausted by my efforts to make everything special and realize that, as a result, nothing is special.
But, in spite of myself, Cynthia has a cherished memory of a Christmas past. It's not the "Nutcracker," the breakfast extravaganza, the trip to Santa's Village, Santa's visit to our home, or last year's coveted singing Ariel mermaid doll that she recalls with childhood enthusiasm.
As we recently drove down St. Albans Road in San Marino, a street lined with massive evergreens festooned in lights, her face brightened as she recalled her favorite Christmas memory. "Mommy, remember when we got out of the car with Meryl and danced down this street in the rain last Christmas?"
"Yes, I sure do remember." And together we talked about the magic we created when we pretended St. Albans Road was the North Pole, a destination we reached on the Polar Express, an imaginary train from a classic children's story. Surrounded by the lights, we held hands and frolicked down the street, splashed in tiny puddles, and felt the raindrops dancing on our cheeks.
We both tingled as we remembered the feeling and I realize that we have a memory in the same league as oranges and homemade ornaments.
My white blood cell counts are slowly but surely rising. The red blood cell and hemoglobin counts are taking some baby steps backward. And we keep doing the dance of the platelets. You know the steps (To the tune of "Hokey Pokey"): We see the platelets go up; we see the platelets come down. We get a transfusion and we turn it all around. We wait a couple Mondays and they come back down again. That's what it's all about. CRAP. CRAP.
Day 21, Thursday, December 6
(Numbers in parentheses are normal ranges.)
WBC 2.0 (4.0-11)
RBC 3.26 (3.8-5.2)
HGB 10.7 (11.5-15.5)
PLT 27 (150-350)
Day 25, Monday, December 10
WBC 2.5 (4.0-11)
RBC 3.09 (3.8-5.2)
HGB 10.3 (11.5-15.5)
PLT 19* (150-350)
*65 after TRANSFUSION
Day 28, Thursday, December 13
WBC 2.7 (4.0-11)
RBC 2.95 (3.8-5.2)
HGB 9.9 (11.5-15.5)
PLT 47 (150-350)
Day 32, Monday, December 17
WBC 2.8 (4.0-11)
RBC 2.73 (3.8-5.2)
HGB 9.3 (11.5-15.5)
PLT 26 (150-350)
Physical: I seldom take naps, I'm walking almost daily (going farther and faster each time) and I'm back to Pilates class. This Wednesday, I plan to try out the Tai Chi class at the Wellness Community in Pasadena.
Mental: The worst of the chemo fog seems to be lifting. I can even sustain the attention it takes to read (and finish) a book. That's a taken-for-granted pleasure that I've missed the most. Now that I have a couple more weeks left in "recovery mode," I plan to take full advantage.
Appetite: I think it's safe to say that my appetite is in full swing, and I'm gradually gaining back weight. A negative side effect is that I'm becoming lazy and spoiled from all of the scrumptious soups, meals and sweets that friends have delivered to the house.
Hear that sound? BEEP, BEEP, BEEP, BEEP, BEEP. That's the sound of me preparing (i.e. heating up) dinner.
Sunday, December 16, 2007
One of the things she said on her first visit has really stuck with me. "We all have so many words per day that we need to get out." I was happy that I could be there as a listening board for her many words that were waiting to spill.
I think the number of words per day varies from person to person. George's mom was a delightful non-stop talker up until her last day. I don't think she ever managed to meet her daily quota of words.
My dad, on the other hand, has little to say; he's quiet to the point of being taciturn. Every once in a while on one of my visits to West Virginia, he talks non-stop for long stretches of time. During these talking jags, I think, "So many stories, so many thoughts needed to be shared." I've always been grateful that I've been in West Virginia to hear them. (Susan K. would no doubt advise me to have a tape recorder ready next time.)
When I think of my new CoH friend and my dad, I'm reminded that it's not enough to simply get the words out, whether it's on the phone, in person, on paper or electronically. What's important is to know that the words are being heard.
I've had a lot to say over the course of the last year. Paula once said to me, "Writers write for one reason and one reason only: they need to. They need to do it for money or they need to do it as a way of expression." I have been an example of someone with a serious NEED to write. I'm just now realizing that one of those reasons was the need to be heard.
And, in spite of my recent post about transitioning to the food blog, I still have a need to get out a lot more words per day. I'm crying right now as I'm typing this because I'm so grateful to all of you for giving me this powerful and healing gift of reading and hearing my words.
Saturday, December 15, 2007
Because I have frequent flyer cards in both the stem cell collection and transfusion rooms and a pre-diagnosis career in the energy efficiency industry, I'm tickled pink by this announcement.
I just wonder if patients will still have to ask for a blood warmer when harvesting stem cells.
Here's the complete story from today's Pasadena Star News:
City of Hope begins work on new transfusion center
DUARTE - City of Hope officials will break ground today on the new Michael Amini Transfusion Medicine Center. The new facility will also house the CoH's stem cell collection unit and the National Marrow Donor Program.
The new 60,000-square-foot facility will allow City of Hope to expand its blood collection, analysis, processing and transfusion programs to meet increasing patient and donor volume, officials said.
It is also the institution's first green-certified building.
City of Hope President and Chief Executive Officer Michael Friedman and Chief Medical Officer Dr. Alexandra Levine were expected to don hardhats and shovels for the ground-breaking ceremony, alongside Michael Amini, chairman and chief executive officer of AICO, Amini Innovation Corp.
Amini, a longtime supporter of City of Hope, contributed $6 million to fund the construction of the facility. The Conrad N. Hilton Foundation gave a $2 million matching grant.
"I learned of City of Hope through a close business colleague, and after attending several fundraising events, getting to know individuals treated at City of Hope, and touring the facility, I realized that this was a place truly worthy of my strongest support," said Amini. "It is my hope that this building will support City of Hope's treatment and research for decades to come."
The Amini Center will house all components of the Department of Transfusion Medicine, consolidating City of Hope's blood collection and processing programs and providing a modern, comfortable environment for patients, donors and staff, officials said.
The new facility will enable City of Hope to expand transfusion services for transplant, oncology and surgery patients, participate in leading-edge cellular therapy research, and meet new and future government-mandated processing requirements for blood and stem cells and accommodate further expansion.
The facility's second floor will house the Blood Donor Center, the Stem Cell Collection Unit for patients, the National Marrow Donor Program and blood recruitment offices, and physicians' offices. It will also feature space for private consultation, state-of-the-art blood and platelet collection, treatment services for transplant patients, and a specially designed area for pediatric services.
The Amini Center's third floor will be used to expand operations and meet the department's future needs.
"Transfusion medicine plays an increasingly prominent role in modern medical care," said Friedman. "Without life-sustaining transfusion support, many complex treatments and surgical procedures would not be possible."
Certified by the United States Building Council, the Amini Center's design meets the rigorous standards of the Leadership in Energy and Environmental Design rating system, officials said.
The building maximizes energy resources while integrating eco-friendly innovations and technologies, including a cool roof to reduce energy demand and energy-efficient HV/AC equipment. Recycled content products such as insulation, steel and ceramic tile flooring will be used for the building's construction.
Thursday, December 13, 2007
These days, when I see a well groomed, coordinated family, I like to remark to myself, "Why, they look like they've just stepped out of the same catalog," whether it's The Gap, JC Penney's or Neiman Marcus.
We are not that family. We are the poster family for mix-it-up diversity. We don't worship at the same churches, dress from the same catalogs or order from the same menus. And, most of the time, it works for us.
George is a blue-eyed, English-Irish Mayflower descendant. I'm a Hapa, with my mother contributing the kimono-wearing Japanese half and my dad the kilt-clad Scottish side. Cindy is a raven-haired beauty with family roots in Jalisco, Mexico. When it comes to religion, I like to call us the "ABC family" with an agnostic, a Baptist-Buddhist and a Catholic under the same roof. No problem.
As for catalogs, I gravitate towards the classics in J Crew or Banana Republic and throw in a touch of vintage for panache. George (and I hate to admit this) is partial to JC Penney's with no added panache. And it's impossible to confine Cindy's sense of style to a single catalog. Suffice it to say that she would not be caught dead in either Banana or JC Penney's. Again, not a problem.
But what's a family to do when the taste buds swing farther apart than the catalogs?
Let's start with a simple family pasta dinner. I like my pasta cooked al dente, but 18-year-old Cindy and George prefer their noodles wiggly. Cindy, who still has the taste preferences of a pre-schooler ordering from a kid's menu, loves penne pasta with butter and Parmesan cheese. At least she shuns the sawdust in the green can in favor of the freshly grated variety. Of course, sugar-laced Spaghetti O's are still a fave. (Although, now that I'm home from Hotel Hope, I've banned them from our pantry.)
George's favorite dinner is spaghetti with meat sauce, salad and bread. Sounds simple enough, but we're palate opposites in every category. He likes my doctored-up version of sauce in a jar with ground meat, fresh herbs, crushed red pepper and wine. I'm in heaven with fresh tomatoes from the garden with plenty of fresh-picked basil cooked up in lots of garlic and olive oil served over a bed of angel hair pasta. ("This pasta is too skinny," huffs George.)
For George, salad is based on the "polyester of lettuces," Iceberg. Throw in a few tomatoes (even when they're anemic and out-of-season) and a chopped carrot, top it with bottled Thousand Island dressing and he chows down. The bread should be soft on the outside and soft on the inside. (All of this, of course, is even more upsetting to me than shopping trips to JC Penney's.)
So what's a mom/head cook to do? Take the hard line, "If you want it YOUR way, then cook it your way" tack? Go for the least common denominator and serve up something acceptable to everyone? Bite the soggy bullet and settle for water-logged instead of al dente pasta? Keep trying to convert my family to the virtues of slightly chewy pasta, designer lettuces, home-made balsamic dressings and crusty breads? Sigh.
I'll bet the family in the JC Penney's catalog doesn't have these problems.
COMMENTS: When it comes to food, are you a catalog family? What challenges does your family face?
(This food essay also appears at www.openmouthinsertfork.blogspot.com)
Tuesday, December 11, 2007
Like the best (or worst) thrill rides, this one has had many unexpected twists and hair-raising turns, including a few where I just closed my eyes and prayed for the ride to be over NOW. But, in other ways, it's been like a passage through the "Tunnel of Love" with special time with family and friends as well as opportunity for reflection and leisurely travel.
Many friends have asked, "Is this the end of your treatment?" The answer is yes, for now. Who knows what the future will bring. The only thing that all of us, with or without Mantle Cell Lymphoma, can do is to enjoy each day as it comes.
As I grow stronger physically and mentally every day, I'm starting to think more about how I want to compose my life when it's no longer centered around chemo, blood tests, transfusions, harvesting, hospital stays, doctor's appointments and naps. One small aspect involves my blogging. For months, I've talked about moving from my Cancer Banter blog to my food blog, "Open Mouth, Insert Fork." Instead of an abrupt change from one to the other, I've decided to make a gradual transition.
I'm going to start by copying several of my food-related essays to Open Mouth. Then I'll post food writing on both sites. After that, I'll redirect Cancer Banter readers to Open Mouth for food writing. Eventually, most of my posts will be on Open Mouth, and I'll redirect readers to Cancer Banter when I post a cancer-related update.
In the meantime, I've contacted the good folks at Duke's Mayo. They've agreed to provide four jars of Duke's for upcoming contests. The first contest will test how much you really know about my food preferences. It's time to dip into the archives to bone up on questions such as "What kind of mayo does Susan like on her BLTs?" OK, that one was too easy, but you get the idea.
Let the transition begin!
Saturday, December 8, 2007
Day 18, Monday, December 3
(Numbers in parentheses are normal ranges.)
WBC 2.7 (4.0-11)
RBC 3.39 (3.8-5.2)
HGB 11.3 (11.5-15.5)
PLT 41 (150-350)
Day 21, Thursday, December 6
WBC 2.0 (4.0-11)
RBC 3.26 (3.8-5.2)
HGB 10.7 (11.5-15.5)
PLT 27 (150-350)
I've managed to do an outing each day, but I'm very careful about not over-exhausting myself. I'm getting spoiled with curb-to-curb pickup and drop-off service. Friends drove out of their way on Wednesday evening to take me to the IWOSC holiday party at the Biltmore in downtown LA. My plan was to sip one permitted drink, stay for 45 minutes and then drive home with George, who works just a few blocks away.
I looked around in amazement at the many people who could stand, sip and carry on an animated conversation simultaneously. I, on the other hand, headed straight for the nearest plush sofa in the opulent Rendezvous Court. Of course, my inability to stand and sip may have had as much to do with my stiletto "slut" pumps as post-chemo fatigue. Nonetheless, I was plum tuckered out by the time George picked me up.
Yesterday, I was out and about for nearly three hours with another friend. We finally got to try the recommended almond green tea (more about this later) at the Tea Station in Alhambra and shopped at two produce markets. I was tired but not exhausted when we returned home. And I managed to pull off an entire day without a nap.
I just got back from a neighborhood walk that was probably the same distance that I hoofed while a guest at Hotel Hope. The difference, and it's a huge one, is that my neighborhood is hilly. At the hospital, I could power walk the 1.5 miles without stopping, but I need to take frequent breaks during the ups and downs of my neighborhood hike. I know that I'll see steady progress, just as I did after Hyper CVAD. For now, it's very humbling for someone who was doing 4-mile mountain hikes in Colorado just a few weeks ago.
I try to do a little bit more each day while listening very closely to what my body is telling me. Oh, excuse me. I think my body's trying to tell me something right now. What's that? Take a little nap? No problem.
Friday, December 7, 2007
Frank Lloyd Wright's early work in the 1890's included high-pitched,
Tudor-style homes that were in stark contrast to his trademark, low-slung Prairie homes.
front page of USA Today while this photo graced the cover of the
Chicago Tribune's Red Eye Magazine.
at the entrance of the Prossnitz's three-story Victorian home.
French Pinot Noir is served in plastic cups along
side Great Books classics.
Wife Liza, a CPA at one of Chicago's leading accounting firms,
reluctantly joins the scene. "This party sucks," she admits.
(We all disagree.)
The guests had no problem embracing both personae and provided loads of heart-felt good wishes without an ounce of pity. I liked that.
As soon as Hot Rocks, the Rolling Stones tribute band, began to play, it didn't take much to "start me up" on the road to complete "satisfaction."
At parties as in life, the most memorable moments are often the unplanned ones. At the last Stones party two years ago, that moment came when I took a midnight rendezvous with a gay decorator (a former client of Howard's) to see the Prairie-style home he decorated in the neighborhood. "I have the keys and the clients aren't home," he tempted while dangling the keys. I ran two blocks in a cold, Chicago downpour to get a tour of the house. (OK, I'll admit it: I'm a house ho.)
This year, that memorable moment came in the form of party guest Nina, a book editor by day and Janis Joplin channeler by night. Nina pinch hit for Mick, who had a touch of laryngitis that night.
While I was undergoing chemo, I couldn't get her soulful styling of "Me and Bobby McGee" out of my head. Never mind that the only words I knew were, "La, la, la, la, la, la, la, la, la. La, la, la, la, la la, la." That song got me through more than one dreadful night.
invited her, I didn't even know she could sing," confesses Howard.
Once I was lucky enough to have Dr. Forman as my own doctor, I quickly realized that it's not his rock-star qualities or world-wide reputation that make him extraordinary. It's his compassion, caring, unwavering sense of humor, humility and down-to-earth nature that make him special.
Just the same, if I ever see Mick Jagger strutting across my path, I'm sure I'll nudge George and whisper, "That was Sir Mick. It was just like seeing Dr. Stephen Forman walk by."
Wednesday, December 5, 2007
Quick: Can you name the pets in the Carrier household? If you said, "Betty, Heather and Tiger," you'd only be partially right.
I'm also the proud parent of hundreds of worms who once lived in a worm bin in our back yard. Right before I started chemo, I opted to keep the four-footed creatures, but began the search for a "foster home" for my footless friends. After all, their habitat is a combination of poop and live bacteria. (For those not in the know, the worm poop or "casings" are an excellent source of nutrients for the garden.)
I put a lot of thought into finding just the right foster home. Of course, the ideal parents would have to be worm lovers. They also needed to be conscientious, preferably have no children or pets of their own to distract them from worm-keeping, maintain their own vegetable garden and live close so that I could easily visit.
I found the perfect foster parents in Janet and Donny, who met every one of the criteria. (Alas, my own family met only one out of five.) As it turns out, they have been "spoiling" the little wrigglers by providing a steady supply of their favorite foods. Yes, worms are very picky eaters. As we both discovered, a carrot in a worm bin is like a diaper in a landfill - it can hang around until the turn of the next century. (I tried pulverizing carrots in a food processor, but the worms still woudn't touch 'em.) But melon, especially watermelon, is instantly devoured. Ditto with corn.
My nurse practitioner tells me that I'll be fit to be a parent again in three months. I may have to work out some kind of joint parenting agreement or, at the very least, visitation rights and shared poop with Janet and Donny. I hope we'll be able to hammer out an agreement without hiring a family lawyer. I don't know any that specialize in worms.
Paula has suggested that I throw a wormcoming party when the time comes. I love the idea and, in your honor, have decided to name my babies after everyone on "Team Susan." Now, haven't you always wanted a worm named after you?
Tuesday, December 4, 2007
On one of my "hospital rounds," my physical therapist asked if she could come along. I looked down at her short stature and shorter legs and said, "Sure, if you think you can keep up. I have long legs, and I know how to use them." It was like a Great Dane walking with a Pomeranian.
My walk started down a long, ghost-like corridor.
Two corridors later, I walked through the light-filled breezeway.
I enjoyed passing this patient in the next corridor. She almost always had a roomful of visitors from her familia grande.
My favorite part of the walk was my mini lap around the light-filled lobby.
Before I knew it, I was back in the corridor by my room. Just nine laps to go.
In the meantime, I'm getting lots of rest and feeling more energetic each day. I'm being very careful now about moving from horizontal to vertical to ambulatory. My blood pressure was so low on Sunday that I fainted and cut my finger on the way down. I was on the phone with Cindy and woke up when I heard her pleas of "Mom? Mom? MOM?!? Are you there? MOM!!!"
Sunday, December 2, 2007
(Numbers in parentheses are normal ranges)
WBC 10.4 (4.0-11)
RBC 2.88 (3.8-5.2)
HGB 9.7 (11.5-15.5)
PLT 11 (150-350) (65 after morning transfusion)
Day 16, Saturday, December 1
WBC 2.2 (4.0-11)
RBC 3.4 (3.8-5.2)
HGB 11.4 (11.5-15.5)
PLT 54 (150-350)
I got some great news on Saturday. I went in for a blood draw and found out that I didn't need a transfusion of either red blood or platelets.
My white blood cell (WBC) count is dropping, but that's to be expected. They were on an artificial high, not a natural high, from the Neupogen injections.
I'm particularly thrilled at the red blood cell (RBC) and hemoglobin (HGB) counts. They are at their highest since I began the chemo process in late March. Since I haven't had a transfusion since Day 7, November 22, we know this is a natural high. My reinfused stem cells are doing an excellent job of pumping out new RBCs.
And the platelets took only a slight dip, not a nose dive, since my transfusion on the morning of November 29. This is a very encouraging trend. (Hmmm . . . Substitute "Dow Jones" for "platelets," and I sound like a business writer.)
In spite of high hemoglobin and high spirits, my energy levels are at a natural low, but this is perfectly normal. I'm inspired by our felines, Tiger and Heather, who use a series of cat naps (or is it one long nap) to recharge their purring machines.
I've been trying to go on one small, non-hospital-related outing each day, but it may be too much just now. On Friday night, Mary picked me up to take me to a reading by the students in Terrie Silverman's Creative Rites workshop. The readings were engaging, entertaining and inspiring, but my eyelids started to become heavy after 45 minutes.
On Saturday morning, I couldn't resist the urge to go to a 50%-off private sale for Wasabi Jewelry. Throw in an extra 20% off for earrings and bracelets, and there was no way I could stay away, especially since I was getting tired of wearing the same two pairs of earrings. I felt up to the 14 minute drive to a private home in Pasadena, 20 minutes of browsing and paying, and a 14 minute drive home. (Mapquest has become particularly valuable in helping me figure out, "Am I up to this?")
I was filled with the thee Vs (vim, vigor and vitality) until I was ready to pay. By that point, I was pooped and needed to plop down in a chair in order to pull out cash for my two new pairs of earrings. After I returned home, it was time for George and me to head for the City of Hope for my blood draw. By the time we arrived home again two hours later, I was exhausted and joined the cats for a mid-day nap.
I guess it all goes back to the title of a former Paula post: Nap time WILL be enforced. The good news is that we don't need to call in the nap police to get me to snooze these days.
Friday, November 30, 2007
Given my past history of slacker blood rebounding and near disastrous stem cell harvesting, it was realistic for Dr. Forman and me to expect a four to five week stay at Hotel Hope.
So how do you explain the fact that I'm home after just three weeks? I know that there are hundreds of people praying and thinking good thoughts for me - many are dear friends, others are friends of friends, but many more are complete strangers.
I'm humbled by and grateful to all of you.
I realize now that my need for daytime ZZZs had little to do with the killer chemo or low blood counts. I was feeling the cumulative effects of three weeks of sleep deprivation.
During week one, staff monitored my vital signs every 30 minutes on at least three nights. The other nights were interrupted with heavy-duty nausea and/or throwing up until I received sleep-inducing doses of Benadryl or Atavan. Sleep often came in 20 minute increments, if it came at all.
During week two, my physical health improved significantly. I no longer needed continuous monitoring of vitals, and the worst of the nausea had passed. But run-of-the-mill insomnia set in. I couldn't turn off my racing brain after my head hit the pillow. I fixated on family issues, such as "Can an 18-year-old daughter die from a steady diet of Spaghetti-Os?"
From there, I'd move on to the "I wonder" fixation category. "I wonder when 20th Century Fox became just Fox? (Or did it?)" "I wonder if they thought about becoming 21st Century Fox?" "I wonder if the name 2oth Century Fox had a modern ring when it was first conceived." Before I knew it, the nurse was in for my 4:00 am blood draw, and I realized I hadn't slept a wink. (These may be interesting questions, but hardly worth losing sleep over.)
By week three, I'd learned how to turn off my racing brain. I fell asleep by 11:30 pm and slept peacefully. That is until I received a "bladder call" three to six times a night. Or vital checks twice a night. Or the 4:00 am blood draw. Or a beeping IV pole at least twice a night. My sleep was interrupted anywhere from eight to 12 times a night.
Rita, a fellow hematology patient in my exercise class, told us that her husband came to spend three nights with her. After the first night of continuous interruptions, he decided to sleep in his truck on nights two and three. I'm not surprised that he got a better night's sleep in a truck than a hospital room.
Now I'm enjoying the benefits of home, sleep home. An hour after returning from Hotel Hope, I settled in for a one-hour nap from 5:00 to 6:00 pm. I fell asleep by 11:00 pm and, still programmed for the 4:00 am blood draw, woke up at 3:45 am. I answered a bladder call and fell immediately back to sleep again until 7:30 this morning.
Sweet, deep, uninterrupted sleep. There's nothing like it.
Thursday, November 29, 2007
I do, however, have trouble with one of the guidelines:
"If pets are allowed to stay with you, you should avoid close physical contact with them and they should not sleep in the same room with you."First of all, what's the point of having pets if you have to "avoid close physical contact." Second, our dog, Betty, has slept at the foot of our bed for 11 years. Our cat Heather likes to sleep curled up near my face. (Tiger chooses not to join the family bed.)
I'd love to hear from other pet-loving post-transplanters, both auto and allo. How have you handled the "close physical contact" clause? And how do you kick out a dog from its "rightful" place at the foot of the bed?
If you don't feel comfortable leaving a comment, please email me directly at email@example.com.
Thanks in advance from me and the Carrier family pets for any advice you can provide.
UPDATE: I just spoke with Dr. Forman, and he said that this is not an "absolute" since my white counts are high. I just have to make sure that I'm vigilant about washing my hands and that I avoid "kissy kissy" with Betty. I'd still love to hear other pet stories.
Wednesday, November 28, 2007
Click here to find how you can spend two hours of time to help relieve the shortage. (And if you can designate the platelets for me, I won't have to worry about this happening in the future.)
City of Hope may not offer the same luxury service offered by UCLA (as described in an earlier comment from Margaret), but you can be assured of the following perks:
- A wide selection of savory or sweet snacks and fruit juices
- A warm blanket
- A video screened on your own private TV
- A City of Hope Blood Bowl T-Shirt
- A $5 In N Out git certificate and movie coupon for AMC Theatres OR a pint of ice cream from Baskin Robbins
- The chance to win dinner for two at Outback Steakhouse (before November 30)
- A "get out of housework" (or cooking or any other chore you abhor) free card (It's every bit as good as the "cancer card.")
- My undying gratitude
Click here to watch the Carrier family elves. (This takes a few seconds to download.)
You're not seeing double if you think you see two Smookie elves - one with short hair and glasses and the other with long hair (a wig) and no glasses. I was experimenting with different photos and couldn't figure out how to delete one.
As a consolation prize, my Taiwan-born foodie-dietitian has promised to write down HER recommendations in two of the categories, along with a list of her favorite food bloggers. (In the San Gabriel Valley, it seems that the best food bloggers are Asian-Americans in their 20s or 30s.)
I will be allowed to have restaurant tea, as long as it's hot. (Dr. Forman had given me permission last week to bring in passion fruit tea from Au 79. Had he realized that the tea was iced and included bits of fresh fruit, it would have been a no-no. Oops.) My dietitian recommends (and permits) the Tea Station's almond green tea (green tea with hot almond milk.) Friends: Get ready for a lot of field trips with me to Alhambra, Arcadia, San Gabriel and Temple City for tea.
The good news is that I am permitted home-cooked food, as long as my healthy friends can attest that the vegetables and fruits were well washed and that the food was not contaminated with coughs or sneezes.
I think I know someone who makes a killer sweet potato pie. I'll bet it will taste great with almond tea.
Tuesday, November 27, 2007
a) take up skydiving since she doesn't have to worry about messing up her hair,
b) start training for the L.A. Marathon, or
c) offer to double-check the holiday lights on Christmas Tree Lane by climbing up each tree like a monkey.
Let's make it easy for Susan to take it easy during the holiday season. When you have a moment, email Janet Aird to update your availability to hang with our favorite multi-tasking lymphomaniac for an hour or two.
She may need a ride to CoH or help running errands. (Note: if she wants to re-roof the house "just for fun," you have permission to tie her to a chair and call for reinforcements)
Before I check out, I thought I'd take you through a day in the life at Hotel Hope.
Monday, November 27
7 am to 11am: Met with Dr. Forman, ate breakfast (tea and fresh orange), watched the Today Show, entered blood counts in spread sheet, posted blog, took meds and Benadryl, received platelets, took nap. I discovered that the oral form of Benadryl leaves me much less groggy than the drip. Received at least ten visits from nurses and PCA to check vitals, share blood count results, give meds, change IV bags, calm beeping IV pole, administer platelets, check toilet contents, etc.
11am to 11:45 am: Hematology patient exercise class. This was a blast. While we worked out, we shared laughs about the many indignities of being a patient.
11:45 am to noon: Pole danced.
Noon to 1 pm: Visited with Dave, my mantle cell lymphoma (MCL) mirror image. (We're both one-in-a-million MCLers with the disease manifesting itself around our eyes - his left, my right.) He's now two years post transplant and was at CoH for his six-month CT scan and blood test. He's a funny guy and had me in stitches with his "war stories."
1 pm to 2:00 pm: Ordered and ate lunch (patient-made tuna salad: tuna, boiled egg, relish, mustard, mayo on saltines). Watched the Food Network. Checked email and favorite blogs. Talked on phone. Received multiple visits from nurse and PCA.
2:00 pm to 2:30 pm: Napped.
2:30 pm to 3:05 pm: Got unleashed from my dance partner. Did a 1.5 mile walk. I found out last week that I'm allowed to enter the door that says "Authorized Personnel Only," making it easier to make a big lap around the entire floor. If I throw in a mini jaunt around the lobby, ten laps equals 1.5 miles.
3:05 to 3:30 pm: Showered, groomed, changed clothing.
3:30 to 3:45 pm: Received an in-room haircut. Got rehooked to dance partner.
3:45 pm to 5:00 pm: Watched end of Oprah and all of Ellen Show (I love Ellen) while catching up on email.
5:00 pm to 6:00 pm: Read NY Times online. Fixated on article about over 50's volunteering for the Peace Corps. Talked on phone.
6:00 pm to 7:00 pm: Ordered and ate dinner (hamburger patty with grilled tomato and onions, carton of milk).
7:00 pm to 8:00 pm: Tired. Watched mindless sitcom reruns. Didn't attempt to multi-task.
8:00 pm to 10:00 pm: Enjoyed Christmas Caroling by the City of Hope Singers. Surfed food blogs and worked on my list of "things to eat" when I return home. Caught up on email. Talked on phone. Revised IWOSC's evite for holiday party.
10:00 pm to 11:00 pm: Watched Seinfeld reruns while reading LA Times.
11:00 pm to 11:30 pm: Contemplated the many things for which I'm thankful; fell asleep.
Monday, November 26, 2007
My white counts more than doubled since yesterday to an astounding 2.8, and my red blood cells are still maintaining their levels. As I predicted, my platelets fell to 15, so I'll need another transfusion today. Dr. Forman said that platelets are always the last to rise.
The great news is that I may be able to go home THIS WEEK. The stubborn platelets are not an issue because Dr. Forman said that I can easily come in to CoH for transfusions. This is the best, most unexpected news ever!