Saturday, March 31, 2007
It's now 2:35 am and, in spite of the pre-chemo Atavan drip, I can't sleep. I'm longing to be back in my saggy California king bed beside my snoring husband, two orange cats and matted dog.
Thursday, March 29, 2007
It's great to be writing and reading the blog again. Paula's posts are golden and your comments inspire me and help me stay connected. (Yes, I confess - I'm addicted to comments nearly as much as I am to the Benadryl that drips through my veins.)
I'm hoping that these lucid moments will last, but who knows. Paula has previously warned me about the perils of blogging while blottoed on medication. Just this afternoon, during Skye's and Karen's visit, I found that I couldn't access the word "closet." It kept coming out "cottage." Blame it on the Atavan!
In spite of the minor word confusion, it was a delightful visit, with all three of us animated and engaged, but I can't make any promises to future visitors about my ability to carry on a coherent conversation. I can at least share with you the beautiful album of candid photos that Skye took at the Bon Voyage party. After all, a picture's still worth a thousand words.
She started collecting names of those who could give Cindy rides, and now she's all about making sure George and Cindy don't starve.
Seriously, several of you asked about helping out with meals. If you have a casserole recipe you are just itching to make, email Janet and let her know.
She's still taking names for the Cindy Shuttle as well.
But the first test to my ability to "stay positive" came when I checked in to Hotel Hope on Tuesday night. No, it's not the Ritz Carlton. Hey it's not even the Best Western, but it does have a few amenities and services that we're missing at home.
What I have at CoH / What We Have at Home
A firm, twin-sized adjustable bed / A sagging California King-Size bed
Sheets changed daily / Sheets changed weekly.
Daily breakfast in bed / Breakfast in bed on Mother's day, followed by a messy kitchen
Daily lunch in bed / Lunch at the kitchen table or office desk
Daily dinner in bed / Dinner in the dining room or out
No food shopping, preparation or cleanup / Weekly shopping and daily preparation and cleanup
A selection of 40 breakfast items / Three cereal types, bagels, fruit, yogurt
An extensive lunch/dinner menu with 76 selections / Three cans of soup, a jar of peanut butter, jelly, sliced turkey, canned tuna, wheat bread, pickles with a possible expiration date
Choice of 15 main courses with daily specials / Choices??
A flat-screen TV with VCR and DVD players, Cable and remote control / Bedroom TV with NO VCR and DVD, NO cable and remote control
The ability to sleep whenever I want for as long as I want. (After yesternday's record 14-hour snooze, I felt like conquering the world, or at the very least kicking some MCL. backside) / The ability to sleep in until 7:30 am on days that I'm not taking Cindy to school.
And it's especially easy to stay positive when, as Paula reported, I have high energy, good appetite and no harmful side effects after two days of intensive chemo. Those anti-nausea, anti-anxiety drugs are miraculous! When my white blood cell counts begin to drop, it may be a very different story, but I'm enjoying the bright moments while they last.
The next 10 hours were one long nap. "A very deep sleep" according to Susan. She's is up this morning and plans to take a shower and take her laptop downstairs (where there is WiFi) and post before her next round of chemo starts around 11 a.m.
She sounds good! Do call before you head over—it sounds like she has just a few hours in between those long chunks of snoozing.She's be there through Sunday. And here's something good to know: visitors can purchase meal tickets so they can share lunch or dinner with patient pals.
I'm out for most of the day, but I'm sure Susan will post if she can.
Wednesday, March 28, 2007
However, Wednesdays and Fridays are a challenge because she goes from school in Arcadia to her job at the Paseo Colorado.
If you can provide a ride, email Janet directly and let her know which days you can help. She'll give the list to George and he'll contact you directly.
George called at 9:30 a.m. (note to self: stop leaving the house) and provided more details.
On today's agenda is the colonoscopy, followed by the installation of a "permanent" IV line. This sounds a bit fearsome, but it's a whole lot better than getting punctured in a new place each time.
The chemo will start later today, as will powerful drugs to inhibit nausea. Susan said they let her know the anti-nausea meds will likely all but knock her out. Hey, catching Z's beats blowing chunks, am I right?
In an earlier post, Susan shared information about visiting her. To recap/update:
• The CoH visitor guidelines are here.
• You may call 626/256-4673 and ask for the "nurse on duty" for Susan Carrier to see if she is up to having visitors.
• Susan is in room #5231, if you want to send a card. (CoH is very picky about flowers and plants, so check the guidelines first.)
Y'know gang, it might make sense to give Susan a day or two so she can settle in and gauge her energy level (or lack of same). Visitors are so much more fun when one is conscious.
That's all for now...
Tuesday, March 27, 2007
Susan is on her way to the City of Hope with George at the wheel, and Cindy and her sweetie in the backseat. Susan's riding shotgun, of course, with her cell phone glued to her ear. She blogged before leaving home, and called me at 7 p.m. to fill me in.
She told me a few days ago that she planned to take her laptop to the hospital, but I don't know if she did. The staff says there is WiFi in the rooms but former patients beg to differ, so Internet access is anyone's guess.
Even if she is offline for several days, keep leaving your comments. Susan appreciates the support, and I suspect George and Cindy may eyeball this blog as well. Susan may be by herself at the hospital, but she sure as heck is not alone.
I'll post again tomorrow evening.
One problem: I've already started my "cleansing cocktail" regimen.
Stay tuned for the answers to these questions:
- Will George receive his first speeding ticket as he races from downtown LA to Altadena?
- Will I make it to the City of Hope without an embarrassing incident?
- Will I refrain from going bonkers once I get there?
Paula, I pass the baton to you.
In partial penance for two weeks of over-indulgence, the City of Hope's GI department has ordered Susan to fast for 24 hours before admittance on Wednesday, March 28. Her treatment has been delayed until doctors can perform a colonoscopy.
Monday, March 26, 2007
Starve a fever...
Bombard mantel cell lymphoma with enough calories to sustain the average American family for a week...
Isn't that how the old saying goes? Judging from Sunday's spread, Susan will not leave home hungry. While we wait for her next post, let's dish about the brunch. If you ask me, salmon on a bagel is heaven on earth!
And how cute was the pixie cut? How charming was Cindy? How stylish was George? How well-behaved was Betty?
The answer to all is VERY.
More than 85 friends joined us at our home to wish me smooth sailing on the SS City of Hope. As promised, I offered bagels, shmears and mimosas, but guests brought every delicacy imaginable, including several selections from the "favorite foods" comments section. Many came with carefully chosen cards, flowers and gifts. Everyone came with love and good wishes for me, George and Cindy.
The afternoon was full of surprises. Latoya, a beautiful young woman of 25 who I've known for 13 years, announced she's pregnant. Rose arrived with the lovely Lola, her new grand baby, in tow. Dave, my fellow lymphomaniac who had a stem cell transplant 10 months ago, made a surprise visit with his puppy Parker. (Pam wrote that he was the healthiest looking guest at the party.) And more than one friend slipped me a "little something for the nausea," if you know what I mean.
It should have come as no surprise to learn that my eclectic assortment of friends liked one another.
As Rich later wrote me, "I am hoping you can bottle all that love and admiration and take a sip of it every once in awhile if things get difficult." I may not be imbibing much alcohol during my treatment, but I have enough good memories bottled up to keep me intoxicated for a long time.
I raise my glass in thanks to all of my dear friends!
Friday, March 23, 2007
- Susan Sports Stylish New Pixie Cut
- Carrier Family Dog Remains Ungroomed
- MD Anderson Votes "Thumbs Up" for Hyper CVAD + Rituxin
- MD Anderson Advises "Wait and See" Approach to Stem Cell Transplant
- Lontz Family Arrives from Virginia
- Lontz Children Thrilled by Palm Trees and Mountains
- Susan Takes on Major Rehab Project Before Treatment
- Painters to Finish by Saturday
- Paula Takes Over as Cancer Correspondent
- Mighty Oak in Carrier Yard Must Fall
- Carriers to Host Open House On Sunday
Paula Johnson here. Just checking in to let you know I'll be blogging for our favorite lymphomaniac during her sleep-overs at the City of Hope.
I would like to think Susan picked me because I have a journalism degree and once worked as a newspaper editor. In reality, I likely got this gig because I am the only person she knows who knows how to use Blogger.
Either way, I accept the honor!
Thursday, March 22, 2007
Thirty minutes later I spoke with Dave and learned that he too was diagnosed with mantle cell lymphoma (MCL) and went through a similar chemo treatment that culminated in a stem cell transplant at the City of Hope.
Dave is in the process of writing his "saga," which he graciously emailed to me as soon as he returned home. Opening the file and reading Dave's compelling story was like hitting the mother lode. As it turns out, Dave and I are both the rarest of rare birds. Mantle cell lymphoma is a relatively rare form of cancer, making up 4 to 6% of non-Hodgkins lymphoma cases. Even rarer is when the MCL tumor develops in the eye area, as both of ours did.
Both of us developed a chronic, untreatable skin rash two years before our MCL diagnosis.
Dave's story is filled with warmth, humor, nitty-gritty descriptions and hope. During his in-patient treatments, this athletic 64-year-old man became known for walking the ward with his omnipresent "dance partner" (IV bag) for more than an hour each day. But, in spite of the exercise, he managed to gain ten pounds because of the "room service at Hotel Hope."
Below are the first two paragraphs of his story:
"Monday morning, October 24, 2005… Relief workers struggle to help 3 million displaced survivors of the Pakistan earthquake that killed an estimated 80,000 people… The Simpsons aired on Arab TV… Former Russian KGB agent Alexander Litvinenko is poisoned by ingesting polonium 210, a radioactive isotope, after accusing Russian President Vladimir Putin of orchestrating Russian reporter Anna Politkovskaya’s murder.
From the mundane to the morbid; from the arcane to the absurd, intrigue is all around us. Usually I’m very sensitive to the world's suffering and foibles. But, today I have been diagnosed with Mantle Cell Lymphoma, (MCL)… Perspective blurs."
Wednesday, March 21, 2007
A few friends have asked me about visitor guidelines while I'm a guest at CofH. Visiting hours are from 8 am to 8 pm. For more details, you may go the City of Hope website:
My nurse said that the number of visitors should be limited because I'll be tired out from the treatments. She recommended that visitors call the main number at the City of Hope, 626-256-4673, and ask for the nurse on duty for Susan Carrier. She'll be able to tell you if I'm up to having visitors.
Tuesday, March 20, 2007
I spoke with my hospital advocate this morning and let her know what I expected to happen and when. I also shared with her my escalation plan if these things didn't happen.
Two hours later, I received a call informing me that Dr. Forman will be taking over my case and will review my second opinion from MD Anderson. He just tried to call me on my cell phone, but we live in the boonies of Altadena, where cellular service is hit and miss.
Stay tuned: Will MD Anderson get the second opinion to Dr. Forman in time? Will Dr. Forman have time to review it? (He's in Chicago later this week.) Will Susan proceed with Hyper CVAD on March 26 as planned?
I am strong.
I am invincible.
Alas, the site was discontinued, but my obsession with last meals continues. (The info. lives on at http://www.deadmaneating.com/dmearch.html)
In the last two weeks, I've consumed more than my share of "last meals" before my intense chemo protocol begins. My friend Melanie, a nurse in the hematology department at the City of Hope, warns that I may develop an aversion to eating. Food will no longer be a pursuit and a pleasure.
My last meals have included tender filet mignon and succulent lobster at JJ's Steak House in Pasadena. Pizza with crust as thin and crisp as a cracker at La Maschera. Oolong marinated see bass with ginger soy at PF Changs.
But my favorite foods remind me of why I love Los Angeles: It's teeming with inexpensive but extraordinary ethnic foods that just aren't available in Ravenswood, West Virginia. Last weekend, I had one of my all-time favorites, Vietnamese spring rolls at the Golden Deli Restaurant in San Gabriel.
Jonathan Gold, the food critic for the LA Weekly, first immortalized this popular treat more than a dozen years ago in his LA Times "Counter Intelligence" column. Since then, hardly a year goes by when he doesn't mention the spring rolls.
The New York Times even waxed euphoric about these crispy creations:
For the uninitited, Vietnamese spring rolls come with a plate of crispy romaine lettuce, sliced cucumbers, fresh mint and bean sprouts. Wrap the roll in the lettuce, throw in the assorted veggies and dip in a fish sauce. The result is a heavenly blend of flavors and textures that's impossible to beat.
My Vietnamese manicurist believes that the Golden Deli is not the best and observes that "A lot of Caucasians eat there." But, truth be told, I can't imagine a better spring roll.
Cap it off with a cup of French-pressed coffee, and I could die a happy woman.
(If I have time, I'll share a few more of my favorite foods in pre-treatment blog posts. Please share yours with me too.)
Monday, March 19, 2007
I received an email message today that generated screams and sobs. My dear friend Tara is flying out from Virginia with her husband and two children, Emily and Nathan. I first met Tara when she was a "terrible two" and I was a terrific twenty-year old college student. We have "grown up together" through the various stages of our lives. I'm so moved that she has chosen to be here during this stage of my life.
I last saw Tara, her husband, Travis, and "baby Emily" when we shared an apartment and a few days of sight seeing together in Prague seven years ago.
To see Tara, Travis and Emily again and to meet Nathan is pure joy, joy, joy!
This news creates many unforeseen complications. The hospital is telling me many things that are completely unacceptable. I am hoping that my hospital advocate will quickly and easily resolve this situation. But, if she doesn't, I have written the sordid details in an unpublished blog. I will threaten to publish the rant to my readership of nearly 200 if this matter is not resolved to my satisfaction. If necessary, I will call upon my one degree of separation from the CEO. I will do whatever it takes.
I am strong.
I am invincible.
I am cancer patient!
Saturday, March 17, 2007
I've decided that the easiest way to see everyone is to host a little "bon voyage" open house. I call it a bon voyage party because I figure I'm going to be pretty sea sick from the treatment.
Please stop by on Sunday, March 25, from 11 am to 2 pm. Stay as long or as little as you like. I don't promise a fancy spread but can guarantee a mimosa to sip and a bagel to nosh.
If you need a reminder of our address, please email me privately.
I hope that my out-of-state friends who can't attend will raise their orange juice glasses in a toast to a smooth voyage.
Friday, March 16, 2007
Magazines have also picked up on the “before you die” mania. GQ Magazine did an article called “20 Hamburgers You MUST Eat Before You Die.” (Capital letters are the editor's, not mine.) Other publications have recommend movies to watch and books to read before gasping the final breath. The list of lists goes on and on.
Frankly, I don’t get it. I have enough trouble getting through my own to-do list without trying to fulfill another person’s list. Perhaps these books and lists are for people with no imagination and no lists of their own. Years ago, I remember becoming very irritated with a woman in my book club who wanted to buy a book of recommended book club books. The way I saw it, if you didn’t have at least three books on the night stand and a self-made list of six books you were interested in reading, you should read the writing on the wall: Quit the book club.
A woman in her mid-80’s, an avid traveler, recently told me that one of her children gave her the book “1000 Places to See Before You Die.” I think she felt a little pressure.
And what happens after you’ve eaten all 20 hamburgers and seen all 1001 movies and visited all 1000 places? Does life lose its meaning? Do people actually think, “I can die now”? Or do they go out and buy “1000 MORE Hamburgers You MUST Eat Before You Die.”
I’m thinking of creating a new sub-genre, “1000 Things to Do Before Life-Saving, Intense Treatment That Will Make You Very Sick for a Long Time.” It’s an interesting concept because very few things on my “before I die” list appear on my “before I’m very sick” list. For example, I want to find the perfect purse before I die, but I need to find the perfect overnight bag before I check in to the City of Hope.
I simply don’t have time to find the perfect purse right now. This has been a lifelong pursuit and will, quite likely, continue for the rest of my life. Those who know me well know that I love my Tod’s bags. The leather and craftsmanship are impeccable. The style is classic. And I love those tiny brass feet on the bottom. They come in handy when I’m in a public restroom without hooks in the stall. (Don’t you just hate that?)
In spite of their long list of attributes, my beloved Tod’s are not the perfect purses. I still have to spend far too much time on “search expeditions” for keys and the cell phone.
My friend Carol thought she had found the perfect bag – a diminutive Kate Spade. And, yes, it would have been the perfect bag if she carried only a lipstick, a credit card and a driver’s license. Anything more than that just doesn’t fit. So Carol attaches essential items – keys, cell phone, etc. – to the OUTSIDE of her bag. Her adorable KS now looks more like a pack mule than a purse.
Carol recently announced that the clever Kate Spade has come up with a solution. Apparently, Carol wasn’t the only woman with the pack mule look. KS has created an ancillary purse that attaches to the mini model. And it’s just $200. Correct me if I’m wrong here, but wouldn’t it be easier to take the $200 and just buy a bigger purse?
I think the best solution is to let women “test drive” purses before buying them. Carol would have found that the contents of her life did not fit into her Kate Spade. I would have discovered the search expedition problem.
But, in my case, I can see definite advantages to keeping “find the perfect purse” permanently on my “before I die” list. It’s an elusive hunt, like finding the Lost Atlantis. It will give me a reason to keep fighting for my life. “Stand back, cancer! You can’t take me yet. I have not found the perfect purse.”
Thursday, March 15, 2007
After I blogged about the magical "leprachaun" who harvested several dozen avocados from my back yard, I learned that avocados are more than a guacamole ingredient (unless you're Kraft Foods). The nutrient-rich "alligator pears" are also steeped in cancer-inhibiting anitoxidants. Seems I should have been harvesting and eating those avocados all along.
When I came home from the office today, a fresh batch of guacamole was waiting for me, compliments of Andrew, Cindy's boyfriend. All three of the ingredients he used were found in our own back yard. I knew that Meyers lemons were in abundance, but I had no idea that last summer's tomato plants were still yielding fruit. The end result was a delicious and satisfying dip.
And the greatest satisfaction came from discovering, once again, something I'd missed in my yard and in life.
What have YOU recently discovered in your own "back yard" (both the literal one and the metaphorical one). I hope you'll share in the comments section.
Now I'm scheduled for a long overdue NAP.
Wednesday, March 14, 2007
This was, of course, seven to ten business days after they received my records. I called the City of Hope medical records department and learned that it could take up to ten days to process my request. That meant the entire second opinion process could take nearly a month.
But I don't have a month. I have less than two weeks with the clock ticking before I'm scheduled to start Hyper CVAD at the City of Hope on March 26. If I wanted to get a second opinion treatment plan before that date, I knew I would have to do some major "bird dogging."
This morning I received a serendipitous call from a friend who once managed the medical records department at Cedar Sinai. She encouraged me to walk in and request the records in person. (If that failed, she had a direct connection to the CEO at CofH, but I had a feeling I didn't need to bother the "big guy" with this problem.)
I took her advice and headed straight to the City of Hope. My assigned representative in the records department wasn't available, but Lisa jumped right in and wrangled my records. One down, two to go. I still needed my pathology slides and a CD of my MRI, PET scan and CT scan. Lisa called to let radiology know that I'd be coming over for my records, and they had the CD waiting for me when I arrived ten minutes later. I found the same fast and friendly service in the pathology records department.
I was in and out of the hospital in just under an hour with my complete cancer medical history in hand.
The experience reminded me of my first corporate job in marketing for AT&T. When a demanding client requested (or should I say insisted upon) an expedite from three weeks to three days, I would hand carry the order to ten different departments involved in the process. Then I 'd put on my tightest skirt and sweetest smile and drive to the central office, where I'd sweet talk a supervisor into moving my order to the top of the list. I'd usually follow up with a bottle of Chivas Regal as a thank you. (Hey, you do what you have to do for a client.)
Today, I managed to shave nine and a half days off the front end process at the City of Hope. The records will be on the desk of the MD Anderson consultant by 9 am tomorrow morning.
And I didn't even have to spring for a bottle of Chivas.
Tuesday, March 13, 2007
Today, I continued in hyper mode - getting quotes to repaint the upstairs bedrooms, living room and dining room; going in to the office to tie up a thousand loose ends; investigating the quickest way to get a second opinion from the esteemed MD Anderson Cancer Center. The list goes on.
But halfway through the day, I hit a wall. 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. Fear of what lies ahead. Sadness for the brave "cellmates" who have lost their lives in spite of a valiant fight. Fear that I'll be one of them.
When I'm feeling strong emotions, I always think of the words of Gudrun, a dean of students at an emotional growth boarding school that Cindy attended. "Your feelings are your feelings." (Note to those who don't know Gudrun: You must say this statement veeth a heavy German accent.) Feelings are neither good nor bad, justified nor unjustified, rational nor irrational.
With this in mind, I didn't try to suppress my feelings. I let them and the tears come to the surface. Then I remembered the follow-up question to Gudrun's statement. "What are you going to choose to do with your feelings?" I could choose to stuff them deep down and pretend they don't exist. I could isolate and withdraw from those who want to support me. I could turn the sadness and fear to anger and take it out on others.
My choice? To talk, to share and accept the support and comfort of others. Thank you all for your unwavering love and support.
Monday, March 12, 2007
I expected to start an 8.5 hour infusion of R-CHOP at 10 am today. I came prepared with my chemo companions, Cindy and Andrew, my Apple I-Book, a collection of DVDs, books and magazines. Cindy and Andrew had planned to read "The Notebook" to me during the infusion. (How clever I thought I was - providing entertainment for myself while getting my book-avoiding daughter to READ.)
But the books, magazines, DVDs and laptop were untouched. At 10:30 am, I learned that my chemo was cancelled. Before you start uncorking champagne bottles, let me explain. After closer examination of my PET scans, CT scans and recent MRI results, the team, led by the illustrious Dr. Stephen Forman, concluded that I need a more aggressive approach for my very aggressive mantle cell lymphoma (MCL).
They are recommending Hyper CVAD, a protocol that's highly toxic but highly effective. It requires that I check in to the City of Hope for four to five days of treatment, check out for two weeks and then repeat the process for a total of eight cycles. That adds up to about six months of my life filled with just one agenda item in my calendar: GET WELL.
The team is also recommending a stem cell transplant procedure immediately after the completion of Hyper CVAD, a process that requires a one-month hospital stay.
I had just come to terms with the effect that R-CHOP would have on my life and my calendar. But now I'm trying to wrap my brain around this concept of seven months of intensive treatment. At the moment, I'm in hyper research mode, reading everything I can find about Hyper CVAD and stem cell transplants. I'm also scouring the archives of the mantle cell lymphoma list serve for any mention of these two procedures and the patients' reactions. So far, a number of the "younger" (less than 60 years) patients have opted for this combo and have had overwhelmingly positive results.
I may fly to the MD Anderson Cancer Center in Houston, Texas, for a second opinion, but time is short. I'm scheduled to start treatment at CofH on March 26 and the doctors are uncomfortable with my putting off treatment any later than this. (I tried for mid-April, but I got the "What part of aggressive don't you understand" reaction.)
I'm in a bit of a daze. How can this insidious cancer be so aggressive when I feel so good?
I’m a calendar girl –
The old fashioned kind.
My days are numbered
In neat little boxes
Parading across the page.
The boxes compete
For my attention.
Parties, dinner dates.
See how important I am?
The debris of my life
Spills into the boxes.
Double booking, triple booking,
Elbow to elbow
In crowded boxes.
When the doctor says
Let’s book you for chemo,
I answer, Let me check my calendar
For an empty box.
See how busy I am?
Chemo has five letters.
Strange. It won’t fit
Into any of my boxes.
I must erase
Meetings, appointments, dates.
One box every three weeks.
But I know the truth.
Chemo is a thief.
It will steal my energy
And encroach on all my boxes.
But without it
My days are numbered.
Now isn’t that ironic
For a calendar girl -
The old fashioned kind.
Saturday, March 10, 2007
George, Cindy, Andrew (Cindy's boyfriend) and I will be going together to the City of Hope tomorrow for round one of chemotherapy. The phlebotomist will draw some blood, we'll meet with my doctor for a brief consultation and then I'll be hooked up for an eight and a half hour infusion of R-CHOP (Rituxin + chemo). And, yes, you read that right - 8.5 hours.
George has to scurry off after our meeting with the doctor because he has to be in San Francisco for bank business for three days. But Cindy and Andrew will stay to keep me company, and my friend Chris will bring us all home at the end of the day.
If you're in the Duarte area between 10 am and 6:30 pm, stop by the City of Hope and say hello.
But I've given up on the idea of getting "caught up" because that just ain't gonna' happen. So I've tried to divide my to-do list into two categories: "The world will stop turning if I don't do this" and "The world will NOT stop turning."
It's surprising how few things I have in the first category. As a matter of fact, I was able to eliminate every single item from my endless TO DO list.
So I'm taking a more realistic approach of dividing my list into "My household will stop functioning if I don't do this" and its antecedent, "My household will NOT stop functioning." I do have a few things on the list, but I was able to eliminate many items, such as:
* Groom Betty. (What will drop-in friends think when they see her matted fur?)
* Complete the bedroom custom closet project. (What will drop-in friends think when they see the entire contents of my husband's closet on the bedroom floor?)
* Repaint the entire upstairs (What will drop-in friends think when they see the deplorable paint conditions - chipped baseboards, ceiling stains from water leaks, etc.?)
* Get a new refrigerator. (What will friends think when they bring food and see the deplorable condition of our ancient fridge. The problem is that we must remodel the entire kitchen in order to accommodate a new fridge.)
* Remodel kitchen.
Actually, it just seems that way because March is a month with a record number of weddings, birthdays, going-away get togethers (two different friends are moving to Arizona) and dinner parties, most of which were scheduled before I got the news about my mantle cell lymphoma.
There is one exception. Last night my friend Desiree hosted a happy hour that many of the guests referred to as a "chemo klatch" because it was a show of solidarity before I start chemo on Monday.
I got the following message from my friend Paula (yes, the funny one who was at The Ice House) about the eventing:
"You know, tonight made me feel like a member of a powerful female tribe. And when one of us is threatened, we join forces to vanquish the foe. "
I couldn't have said it better myself, Paula.
When I looked around at the group of women friends - every one of them smart, funny, accomplished, passionate and compassionate - I couldn't help getting all Sally Fieldsish and thinking, "They like me. They really like me."
The best part is that my "Chemo Klatch" extends far beyond the dozen women who were present last night because every single person reading this blog is a member. Now that's one powerful tribe!
Wednesday, March 7, 2007
Many of you know that our 17-year-old daughter, Cindy, decided a few months ago to convert to Catholicism. The whys, hows and wheres are the topic for another post on a different blog. But suffice it to say that George and I are pleased that she's found a religion that begins with a "C" so that we can tell people we're the "ABC family" with an agnostic, a Baptist/Buddhist and a Catholic under the same roof. (Don't you just love diversity?)
At her confirmation class last week, she learned about Lent and the sacrifice of "giving up something" for 40 days. Over the years, my Catholic friends have given up concrete items like pizza, chocolate or Jimmy Choo shoes. I was a little confused when Cindy told us that she was giving up selfishness.
First of all, selfishness is an abstract concept. Second of all, isn't asking a teenage girl to give up selfishness like asking a tiger to give up its stripes or Britney to give up her hair? Er, scratch that last one. Let's say it's like asking Jacko to stop being weird for a few weeks.
After all, a 17-year-old girl is, by nature, a self-loving, self-centered, self-absorbed narcissist. We were convinced that ours, in particular, was a clinical narcissist.
But a miraculous thing happened on the way to the oncologist. Cindy is gradually losing ground from her position at the front and center of the universe. When I offer a ride, she often chirps, "No thanks, mom. I can take the bus." She's pitching in more around the house and following my new mantra (or "diatribe" as my family calls it), "This is a community affair, not a one-woman show!" She's choosing to spend more time with family. She's more aware of the effects her actions have on others. I don't know if it's the cancer or the Catholicism or a little of both, but I like this new, improved Cindy!
We're hoping that she becomes so accustomed to living without selfishness that it doesn't even seem like a "sacrifice" to her. And we hope the new selfless lifestyle will outlive both the Lenten season AND my recovery from cancer. And, while we're at it, I hope that all of the lessons we're learning as a family stick around for the rest of our lives.
I feel blessed to receive this gift from my yard and have just found a recipe for blessed avocados. It's called Holy Guacamole!
(You may all groan now.)
Tuesday, March 6, 2007
A trim, energetic man introduced himself, told me he was 88-years old, and asked me if he could pick the fruit in our back yard. He explained that he was a good tree climber and that he had a ten-foot pole with a bucket at the end. He planned to share the fruit with senior citizens at a nearby nursing home. How could I say "no"?
Ten minutes later, I heard another knock at the door. The beaming man handed me a bag filled with two dozen fresh avocados. "Enjoy these or give em' to your friends," he urged. "Don't you need more to give to the seniors?" I asked. He pointed to two bags bursting with avocados. "I think I have enough and wanted you and your friends to enjoy 'em too."
He went on to tell me that he "still has all his own joints and teeth," is Irish (clearly with the gift of gab) and has a 97-year-old sister who's still climbing trees and picking fruit. I half expected him to do a jig on my front steps.
Now I'm racked with regret. If I had been feeling better, I would have scurried to the back yard t o watch this gentleman in action. Then I would have asked for his name and phone number so that:
- He could come back in the summer to help harvest plums and apricots and in the fall to pluck persimmons.
- I could introduce him to my new friends, a trio of peppy Japanese-American widows in their mid-80s.
- Someone (Debbie at Senior Life?) could do a story about this fascinating guy.
George and a half-dozen other friends have reported back to me that Paula was indeed hilarious. George said that Paula can even make sipping water from a plastic bottle look funny.
I plan to view the DVD with a few friends on Friday and will give a full report later this week.
One thing that I've discovered is that it's easier to be a "funny lady" behind the keyboard than it is to put on a happy face in person. As I mentioned in an earlier post, I missed my friends' wedding on Friday but made an appearance at their reception. I WANTED to be there, but my body didn't. I TRIED to take the focus off how I was feeling by asking questions. (e.g. Now what percentage of the entire portfolio do you recommend that clients invest in foreign currency?) I PRETENDED that I was feeling fine, but I'm apparently not very good at it.
Consequently, my life since Friday has been a series of broken social engagements: a wedding, breakfast, lunches, dinners, The Ice House. This, I see, will be my challenge: figuring out the balance between "giving in" to feelings of exhaustion and sickness or "going out" and continuing to the best of my ability.
Suggestions are welcome!
Sunday, March 4, 2007
As I wrote earlier, the spinal tap was a breeze, but my reaction to a touch of chemo I received was not. On Friday, I left work early and took to my bed for 2.5 hours. I cancelled lunch with a friend. I missed the wedding of my friends David and Patricia. But, hey, I don't like missing out on life, so I pulled myself together to attend their beautiful reception in Pasadena. I nibbled on appetizers and sipped red wine and ended up spending the next 15 minutes . . . (I think you can guess where.)
George took me home before dinner and I had to ask him to "please pull over" two more times. I called the ER at CoH and the nurse on duty had the doctor call in a prescription of Atavan. It works for the nausea, but also puts me straight to slumber land.
Saturday was much of the same. I pulled myself out of bed, tried to take Cindy and her boyfriend, Andrew, to the Farmer's Market (our Saturday ritual), but couldn't make it without decorating the streets of Pasadena and Altadena, if ya' know what I mean.
Today is Sunday and I'm fine as long as I relax in bed. But it's a drag not to be able to do the things I want and need to do.
And just in case you're still worried that this Prius-driving, CFL-using, tree hugging greenie has gone brown, I'm offering a free CFL to the first person who leaves a comment. (A CFL - compact fluorescent light bulb - uses 25% of the energy and lasts 10 times as long as a traditional light bulb.)
Saturday, March 3, 2007
For those who don't know my kind, patient husband, let me share a few things. We have very different approaches to life. I'm a roll-up-the-sleeves-jump-right-in kind of gal. (This has landed me in the emergency room more than once.) He's a thoughtful, let-me-observe-this-situation-until-the-next-millenium kind of guy. It's impossible for us to ski together because I immediately swish down the mountain while he spends at least 10 minutes contemplating every move in advance. When we rent a new car, he spends 15 minutes exploring the car's mechanisms while I take slow, cleansing breaths (designed to keep me from strangling him).
Our approaches during a crisis follow the same course. I immediately plunge in, research, talk, join support groups and listserves. He sits back and observes me plunging, researching and talking. Then he eagerly awaits my summary.
To my credit, I'm good at this stuff. I've been a journalist and a corporate communications writer. Clients ask me to slog through 500 pages of tedium and then summarize in two easy-to-understand paragraphs that make the reader take immediate action.
Since my diagnosis, I've spent dozens of hours reading, researching, assimillating and formulating questions. He has read only one article about mantle cell lymphoma because I INSISTED that he read it before our first consultation. Otherwise, he's happy to wait for the summaries.
I have another brilliant writer friend who is also married to an analytical attorney. Their marriage works much the same way. She researches, fact finds, assimilates and summarizes. He waits for the blurb.
As a matter of fact, I prefaced the articles I forwarded to George with blurbs like, "If you read just one article about mantle cell lymphoma this year, let this be it." And "Two lymph nodes up."
To summarize (because if George reads this blog post, he'll want to head straight for the summmary): George is doing OK emotionally. He's encouraged by my positive attitude. I can't get him to do any research and reading about my disease and treatment, but that's OK. He's great at coming through in a pinch. Just last night he made a late-night run to the 24-hour pharmacy to pick up anti-nausea medication. And for that, he gets, "Two lymph nodes up. WAY up."
PS My friend Amy wrote to tell me that her husband also "waits for the synopsis." Gal Pals, share your stories here!
Friday, March 2, 2007
But after a 2.5 hour nap, I feel almost human again.
I just talked with the nurse at City of Hope and got some good news and great news. The good news is that MOST of the bone marrow biopsy test results are in. So far, my bone marrow is cancer free. We'll have the final results next week.
The great news is that the spinal tap results show that my central nervous system is clean! This banishes my greatest fear. A couple weeks ago I whined to my husband, George, "I've already lost my looks. I don't want to lose my brain too." He squinted his eyes and scrutinized my face for several seconds before pronouncing, "No . . . you haven't lost your looks yet."
Word of caution to other husbands who may be reading this: Be careful about skipping a beat before reassuring your wives about their looks.
Thursday, March 1, 2007
Several years ago, when my dentist was replacing a crown, he suddenly announced, "We have to do a root canal." I didn't have time to fret, and, to my surprise, it wasn't half bad. Not an afternoon at the Kabuki Spa, but not unpleasant.
I'd always imagined that a spinal tap (aka lumbar puncture) could make a root canal seem like a pedicure. In junior high school, I read a novel that described the procedure and the preteen patient's reaction in gruesome, horrific detail. I remember closing my eyes and saying a silent prayer that I could live my entire life without the experience.
It was not to be. Two weeks ago, I learned that a spinal tap was the only way that we could determine if the lymphoma has spread to my central nervous system. I'd been worried about the intermittent tingling sensation in the right side of my face and the droopy corner of my mouth. My doctor was concerned about the proximity of my eye tumor to the brain.
Two friends assured me there was really nothing to it. "Like a bee sting," wrote my friend Tara. "It didn't hurt," commented my friend Lillli. (And she did it WITHOUT anasthesia.)
Just the same, I wasn't taking any chances and asked for conscious sedation. The physican's assistant told me that she recalled only two cases when this was used: with a down syndrome's boy and a very young girl. I felt like a big wimp, swallowed hard and decided to go drug-free.
Before Dr. Wong injected the Lidacane (local anasthesia), she joked, "Here comes the bee sting." Tara was right - one tiny ouch. The rest of the procedure was painless. As the fluid drained from my spinal cord, I unclenched my fists and started to think of pleasant things: The heartwarming blog comments, emails and phone calls. The note from Suzie, my best friend from college, about getting her daughter Kira together with "Cin Bin" (my daughter's toddlerhood nickname). The stew that was waiting for me in my refrigerator. The possibility of shopping at Nordstrom's on the way home. Before I knew it, the procedure was over. Dr. Wong congratulated me on being a "good patient," and I half expected her to pull out a lollypop.
My friend Janet stayed and chatted while I laid flat on my back for two hours in the recovery room. Emeril and Rachel Ray chopped and sauteed on the TV in the background. The two hours flew by. My husband and I ate the delicious stew when I returned home. Cin Bin came home and told me about her job interview. All in all, it was a pretty pleasant afternoon and evening. Not an afternoon at Kabuki Spa, but pretty darned close.
My question for you: What really IS worse than a root canal? It's certainly not a spinal tap. Please share your thoughts in the comment section.