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Friday, January 30, 2009

Girls Weekend and Chemotherapy Cycle 5, Round 1: Therein Lies the Paradox (Blog 16)

The 1st annual Somers Family Girls’ Weekend was “a stitch” as my dearly departed Granny would say.  I am always reminded of her during any family gatherings, be they big or small, and so I feel compelled to tribute her. In fact, to this day relatives comment on the likeness-- nay duplication--that is undeniably engrained in me directly from Granny’s DNA.  That is perhaps the most honorable compliment one could pay me seeing as she is the most gentle, loving, sweet soul I have ever been privileged to know. Moreover, most of her surviving relatives will exclaim—aghast—that I am her absolute scientific replica (physically). Today, they would call me her “Mini-Me.”
Please forgive the following digression. Over time and with life experience, I have come to the conclusion that the memory I present to you is crucial to MY understanding of who I am. I think we can all learn a great deal from those who came before us.
Granny (or, as identified in public records as Francis Lorene Somers Brannon) was, as I was during my hair-donning years, tall, dark, fair-skinned, curvaceous, and emotionally sensitive to a fault (the latter on which I’ve made great strides and can say that I’ve gotten my money’s worth in therapy). When her sisters see me, they catch their breath and manage, “You look just like her…..when we were (fill in the age).”  I began to recognize the resemblance in my early twenties but now the similarities almost haunt me. Sometimes I dream that I am her during her living years—the Great Depression of her childhood, the flirty 1940s that ushered in her first love and her first child, and the later years that, even today--even 17 years after her death--I remember fondly. I see the elderly Me-Granny in a bright, patterned housecoat, my black curls framed just so after my weekly setting at the beauty parlor. I am sitting upright in my green La-Z-Boy, a colander of fresh green beans in my lap and a Tupperware bowl at my side for the remnants. I am ample in size. I have a long, ugly scar that begins at my upper calf, bisects my knee, and ends halfway up my thigh; it is an eternal memory of a childhood surgery that will always cause me to limp. I love so deeply and my grandchildren are so special to me that I envelop them in my arms every time I see them, I cry for them when one knobby-kneed child is attacked by fire ants or another falls off a bike in the driveway, and I marvel at their silliness and their intelligence that seems to multiply with each passing year.  
And sometimes I dream that she is my age during this time of uncertainty, frivolity, and technology—this era better known as “my thirties.” Either way, and despite the seeming impossibility given her status as…um…dead, our relationship has flourished. She has assisted me along my journey of boy problems, job challenges, health issues, and your everyday, vanilla-flavored pain, anguish, and joy. I am blessed to have her with me always and I have aimed to remain faithful to her legacy. In fact, when she died I was an impressionable 13 years old and utterly destroyed by her rapid decline and death. My mom later told me that, in her final hours and only half-conscious, she would call out for her “grandbabies.” I was in Iowa while she was in Houston (my mom was with her) and we--my sister, brother, and I--didn’t make it in time.  I could not forgive my parents for lying to me about her condition even though they were hoping--until the very end--that she would pull through and they didn’t want me to see her connected to monitors, tubes, and needles. Likewise, I could not forgive myself for ignoring my instinct. I KNEW she was dying although no one would admit it. I KNEW she needed me as much as I needed her, although no one would acknowledge that her whimpers were not a result of delirious, drug-induced ramblings, but the final wishes of a dying woman.  And so, as a response, I did what has always been a natural antidote: I wrote.
I shared my poem with my mom just hours before Granny’s visitation. She was moved, cried, hugged me, and wanted a copy of her own to keep. Meanwhile, she placed the gingerly closed (though unsealed) envelope, inscribed “To Granny,” into the casket. One nosey mourner opened, read, and passed my words along. After the poem made its rounds, the Reverend asked if he could read the poem at her funeral service the next morning. During that reading, I found myself overwhelmed with sorrow and horrifically embarrassed—not only was I an impressionable eighth grader, but no one had heard my poetry--ever. In fact, my immediate family had avoided talk of all things religious for as long as I could remember. Prayers were met with snickers, and religion in general was scorned at the time. There was but one problem:  I have always loved God and that cat was just let out of the bag.  At the burial, someone had convinced me to read my poem alongside her casket just before the interment. Although I was intently aware that Granny was holding my hand while I recited, I was almost unable to get through it--seemingly paralyzed with grief. If I recall correctly, someone else stepped forward and offered to finish it for me. I refused and instead mustered the strength to speak on my own, however difficult it was.  Months later, the headstone was placed at her final resting place and there, etched in stone on the back, were the following 16 lines (God knows how much that cost):

Remembrance
Although we may not share another holiday
Or exchange greetings on the phone,
You will always be in my heart
And we will never be alone.
Perhaps it’s for the better
For there is no more misery to follow you.
And now we will always be together
And you will guide me in all I do.
May your spirit live on through eternity
And may heaven take good care, too.
For when we say “die,”
It shall not mean “goodbye,”
But a delay until I see you.
Love Always,
Sarah Suzanne

For most of her life, Granny’s leg prevented her from getting around.  She never had a wheelchair or walker, but she definitely experienced limited mobility throughout her life. In this way too, I resembled my dearly departed Granny, albeit temporarily and not in an enviable way. During the late stages of my chemotherapy, I was a near-invalid whose body was beginning to share a blood supply with the couch. Remember, my Mama is like a friggin’ energizer bunny and Taryn is a marathoner. This was a conflict of interest.
And so, the Girls’ Weekend was entirely too laid back for Mom’s taste as we hung out at home while Taryn and Leigh Anne basked in the God-blessed glory that is The Professional Massage and Facial. Purrrrrrr. I was supposed to partake in this luxury but chemo side effects had other plans for me. It is essential to understand that I do NOT decline an opportunity for pampering and you should therefore comprehend that I was clearly in pain. Writing this while pain-free leads me to wonder if I was also temporarily insane (really, Sarah…really? Not even a facial?).
The weekend began on Friday, January 9th, at  9:00 PM (Houston traffic is a bitch) as we ate spaghetti, garlic bread, and chocolate cake to celebrate three milestone birthdays: a 30th, 50th, and 60th (I won’t assign ages to corresponding individuals although we allowed  24 year-old Taryn join the festivities and eat cake because…..well….we’re nice like that). 
Mom made a fantastic breakfast on Saturday before the scheduled appointments. I opted to sulk while simmering in the reality that my body was not going to cooperate that day. In fact, my muscles ached constantly and blatantly LAUGHED—to near disregard--at my frivolous ideas of spa days and shangri-la. Words couldn’t even BEGIN to address the deplorable state I was in and so I opted to wanly smile and apathetically wave as Leigh Anne and Taryn left for the spa. In reality, I was PISSED OFF at my body for BETRAYING my capricious desires-friggin’ angry that I couldn’t even lay flat for a measly, albeit blissful--massage and facial—because chemo was once again in the way.
Instead, I slept. Later in the day Leigh Anne and Taryn materialized—loosey goosey muscles and glowing skin to boot--and we ate entirely too much food at Mamacita’s for dinner that night.  We eventually settled in to watch The Queen and drink Hot Apple Pies before collapsing into bed—half of us in a liquid state of bliss and the other half in a more—er, maternal--state of appreciative exhaustion. The crowning glory, however, was brunch at Magnolia Pancake Haus on Sunday. In my steroid-induced state of food mania, I had tried to prepare them for this amazing feast but they refused to believe me.  In fact, it wasn’t until we waddled to the car holding our bellies in agony and contemplating naps that they understood one’s need to prepare for such gastric exertion.  A Metamucil cocktail with EX-Lax sidecare will be provided at future Magnolia Pancake Haus ventures.
Upon reflecting on the weekend I rationalized that, because earlier that week I was too sick to eat and even found myself vomiting, it was my duty to tend to my poor, poor, pitiful body that desperately craved—nay, required--pasta, enchiladas, and pancakes. Any oncologist-hematologist would actually prescribe this essential nourishment (just trust me on this—no need to ask one yourself).
Girls Weekend: Me with Taryn and Leigh Anne before brunch
Taryn and Leigh Anne left on Sunday and, after spending the majority of that day on the couch, as usual, Mom and I were going completely stir-crazy for something to do. We spent Monday meandering around The Shops at Artisan’s Alley—if not to torture ourselves because we can’t afford to buy anything, than for inspiration/preparation for hitting the lottery whereupon the Prize Patrol will arrive at my door informing me that I’ve won $5,000 each week for the rest of my life (yes, I was suckered into that).
Later that Monday afternoon, completely wiped out from our walking ventures, I took a long nap, After waking up and meandering into the living room, Mom nodded toward a brown cardboard box sitting on my dining room table and smiled.  “Package!” she trilled. I read the card and immediately acknowledged that it was from my dear friend Cassidy, who was also my internship roommate at one of the political conventions in 2000 (since everyone asks I’ll give a hint: it was held in Philadelphia although my political ideology no longer aligns with that party’s. ‘Nuff said).   Cassidy and I have remained extremely close and she can commiserate with some of my symptoms based on her battle with relapsing/remitting Multiple Sclerosis. She is now an attorney in Omaha and, even though our lives have veered in separate directions, we still keep in close touch and her friendship means so much to me. I tore open the box to find a Burt’s Bees body kit, pink fuzzy slipper socks, a lavender candle, Borders gift card, chocolate brownie mix, chocolate pudding mix, and pictures of us from earlier, thinner, responsibility-free days. She told me that I was expected to enhance the brownie mix with “a little something extra,” although the Patron Saint of Innocence in me has no idea what she’s talking about….
Still in the mood to escape from the confines of the apartment, Mom and I saw the movie “Doubt” on Tuesday (and since we don’t pay for overpriced theater snacks, we remorselessly smuggled Chex Mix and Coke Zero in my big leather handbag). Although it was a movie of a somber nature, it was also such a welcome change from watching the likes of “The Real Housewives of….” on the sofa and it helped me to forget about the next day’s chemo.
That night, Mom and I were digging into our chicken dinner when the doorbell rang: it was Nancy and I had completely forgotten that it was Tuesday night when her daughter takes piano lessons nearby and she comes over to chat. Although I keep telling her to stop bringing me “stuff” (the threshold to my apartment does NOT seat a bouncer required to accept goods in exchange for entry), she still brought me awesome goodies including heavy-duty body lotion for my excessively dry chemo skin and another squeaky toy for Lola. Note to pet-owners that, by the way, Lola is absolutely loving this whole “cancer thing.” It works in her favor. Never before have we had more guests and never before has she been the recipient of so much cuddle time and such a plethora of treats and plush toys. Nancy’s heart is solid gold. Her ebullient presence is so much fun and, even though I’m usually lethargic, I’m always surprised when it’s time for her to pick up Hannah since our lively conversations tend to get carried away (how does someone make capital punishment so entertaining, anyway?). Yet, exhausted from a big day of sitting in a movie theater for two hours, inhaling a large dinner, and gossiping with Nancy, I went to bed pretty early in anticipation of a fun-filled day of chemotherapy.
My Wednesday, January 14th MD appointment yielded bad news. Doctor Wilks took one look at my lab work and was extremely discouraged by my white cell count. Previously 1.4 a month ago and then an astounding 9.0 two weeks ago after Neulasta, it had plummeted down to less than 1.0 when I was back. This was beyond dangerous and any reputable doctor would consider chemo treatment a threat to whatever immunity remained in my body. Still, General Wilksie, serious about keeping me on track, weighed the options carefully and decided to go forward with treatment, minus the extremely toxic and potent nitrogen mustard. My RBCs and Hematocrit were also unbelievably low, so she gave me strict instructions to take it easy. That means, unfortunately, that I would no longer be able to spot my cousin, Taryn, along her 26.2 mile journey of the Houston marathon. No more Olympic training races for me. My invisible track buddies will be sad.
 Dr. Wilks also explained that she’s not sure we can continue with chemo after this round but all would depend on how my body responds to the treatment, the Neulasta, and any illnesses that come my way. Because my counts were so low, she also prescribed the antibiotic Levaquin because, in all likelihood, I will get sick. The question is whether or not I’ll be able to manage that illness at home, have to come into the clinic for slow IV drips, or eventually be hospitalized for round-the-clock care. Therefore, I was sent to the chemo room for Adriamycin and Vinblastine. What they didn’t know, however, is that I came equipped with a secret weapon: the pink boxing gloves that my second cousin Marsha Kay and her husband Bob had sent to me. Dr. Wilks and the nurses signed them, reminding me to keep fighting in spite of the seemingly constant roadblocks. That afternoon I took a long, glorious post-chemo nap, and then awoke to a knock at the door. It was Brown Man from UPS!!!  Mom signed for the box and I came out my bedroom, glanced at it from across the room, and said, “Does that say Sephora?”
“Oh. My. God.” (She said this to prepare herself for potential retail overdose).  “Yes, yes it does,” she said, somehow shocked at my ability to hone in on all things cosmetic from several feet away.
I jumped up, grabbed the scissors, and raced to the parcel.
“I haven’t seen you move that fast in months!” Mama Jackie gasped.
I looked at the box to see that it was from Blair Chappell. Blair lives in Fort Worth and is the daughter of the Jacksons, our dear friends and hosts of the annual Christmas party we attend every year, without fail in Rockport. Inside was the Caudalie Vinotherapie Spa in a Box and I couldn’t have been more delighted to check out my new, luxurious loot. FYI Blair: I’ve used it all and l-o-v-e it all. I sarcastically thank you for indulging an obvious obsession by supplying me with a new drug.
Don’t get me wrong. I am not suggesting that the way to a friend’s heart is through your credit card but I do find myself taken aback by my own unique perspective. As a direct result of my illness, I have been de-friended by those I thought would be in my life forever. Inexplicably, though, the most unlikely friendships have emerged from the most unlikely of sources. It is clear to me now that catastrophe provides a chance for amazing people to offer their equally amazing gifts of warmth, compassion, humor, and healing. Not only does a catastrophic event cause you to realize who your real friends are, but it also has the potential to expose those “background” people you’ve taken for granted. Suddenly, you realize what you’ve been missing. Similarly, cancer has a way of shedding light in the deepest, darkest, most neglected corners of your life.
When it comes to friends and relationships, I can honestly say that I’m tactful but blunt, smart but sensitive. I pride myself on being a most loyal and trustworthy friend to those few people I let into my inner circle, but I won’t be that way at the expense of my integrity. Another way of putting it: I believe that God wants us to give second chances and practice forgiveness, but I also believe he wants us to respect ourselves enough to NOT be a doormat, a challenge that is easier than giving in and allowing others to take full advantage. The harder task is to stay true to oneself.  If nothing else, fighting for my life has given me perspective that I could never have experienced before and, furthermore, I wish this epiphany on others WITHOUT having to go through a serious illness. Specifically, I have been gifted with the realization that life is short, precious, and needn’t be tainted with toxic things or people. My thought process is that you’re either good for me or you’re not. I don’t believe in burning bridges and have thus cut any ties necessary with care, but I refuse to waste more time worrying about stress triggers over which I have no control. There is no redeeming value in being kicked, knocked down, kicked again and kicked yet again. This does not demonstrate nobility or humility and it certainly does not ensure a one-way pass into martyrdom.
For example: One of my two high school best friends went Missing-in-Action when I was diagnosed. I’ll call her Kristy. During a late January phone call just after Girls’ Weekend—a phone call I could only describe as slightly more painful than a bikini wax--she told me that she didn’t know how to react to my “situation.” At this point I still don’t think she could muster the “c” word, particularly after having ignored me for the better part of a year given her own life issues in Kansas City. I could see her point. What a seriously awkward phone call to make: “So, even though I’ve avoided you I did hear about your…uhhhh…..pesky little life-threatening illness. That sucks. Is there…..um…..anything I can do?” I’m still trying to decide if, in the most earnest voice possible, I should have asked with complete conviction if she wouldn’t mind being tested for tissue match as I DESPERATELY need a kidney.
On another note:  Because the efficacy of Neulasta has been proven more reliable when administered the day after chemo, I had to return on Thursday morning for another shot of the blessed/ horrid medication. I’ll reiterate that medical professionals marvel at this wonder drug and its ability to quickly raise a low white blood cell count in order to fight off infection, but patients loathe its nasty side effects. Some people are lucky enough to experience minimal aches, still others feel flu-like for a few days, and about 30% of recipients will experience bone crushing, excruciating pain. Recall that I was one of the latter, writhing in agony WHILE gorked outon Darvocet over Christmas. One nurse explained that, the lower your count the further it has to increase and, thus, the harder the bone marrow has to work to produce more cells. Normally they regenerate on their own without any effects (in other words: most people don’t FEEL their white cells growing), but with a count of less than 1.0--leaving me with virtually no immune system--I had a long way to go with the aid of a very potent drug. To make the best of a lousy situation, I decided to affix one of the fake tattoos that Nancy gave me for my birthday. I applied to the area of injection a sunburst/lightening bolt symbol with the onomatopoeia “ZAP!” (Think Marvel comic strip). Although I was in and out of the clinic in under 20 minutes, Shannon thought my statement HI-LARIOUS. She urged the other nurses over to view the awesome artwork, then recalled a time that a patient wrote “KISS MY ASS” in magic marker where she would be getting an injection in her posterior.  I love that we all start to think alike after enduring this rote routine: Literally separate, yet undeniably united.
That Friday, January 19th, I woke to the same sensation I felt a month prior on Day 1 post-Neulasta: facial pain, body aches, and a general feeling of lethargy, fully knowing that the height of cell regeneration takes a week and the “real” fun hadn’t yet begun.   While Mom sprung into action getting dressed and ready for her big plans of errands and hair appointment (no one, and I mean NO ONE, interferes with a woman’s salon needs), I seemed to be swimming in quicksand and the world around me was operating in slow motion. Her mania clearly did not affect me, seeing as I lazed about in my new fuzzy pink bathrobe and slipper socks until after 1:00. I recall eventually putting on some real clothes (and by “real” I must emphasize that an abundance of elastic and cotton/spandex blend was involved) but the remainder of the weekend was wonderfully uneventful. I will say that on Sunday we were aware of the passing hours as Taryn ran the Houston marathon in my honor. She finished a full minute earlier than her first marathon a year prior (which is truly amazing considering this is only her second marathon) and wore my picture safety-pinned to her t-shirt. Taryn is such an inspiration! I cannot WAIT to finish a race—to PROVE that I am once again healthy and in the name of cancer research—just as T has done.
Taryn after running 26.2 miles. The sweat dripping down my tribute is so poignant ;)
I’m so aware that my blogs are becoming monotonous and I must address that there is a reason for that: my life is monotonous. As the treatments build up in my system and become harder to muddle through, my daily routines become less varied. During chemo weeks, Mom is now a full-time caregiver as she does my grocery shopping, walks and feeds Lola, retrieves my mail, cooks, and keeps up with the cleaning and chores. I pitch in when possible, but that’s becoming more and more rare. Once an early riser, on these weeks I typically wake up between 8:30 and 10:00 and eat something laden with carbohydrates—typically a banana and bagel with cream cheese. I usually have the strength to prepare my own breakfast and clean my own dishes, but the hard work is really presented to me after the various physical efforts of bathing have taken their toll. When I step out of the shower to apply my combination of baby oil and lotion (absolutely, resolutely necessary given my chemo-fried skin), I often wrap up in a towel and flop on top of my unmade bed to rest. By now it is 11:00 and I’m physically exhausted. After pulling on some yoga pants and a t-shirt, brushing my teeth, and resuming my position on the sofa, I spend the next few hours searching for jobs online (gotta get a head start even though I can’t even begin to think about full-time work until April), reading my current book, and napping. As recently as November I had the strength to complete hourly at-home recruiting work for my former Dallas boss, but 45 minute phone conversations followed by 30 minute write-ups is too taxing these days. It’s also a fact that candidates are NEVER able to talk when it’s most convenient for the recruiter and I was consistently getting inundated with phone calls during midday REM-sleep cycles (unfortunately, now nearly every minute of the day is a REM cycle).  Between 5:00 and 6:00 PM I have at least two glasses of wine while Mom prepares dinner. Strangely, this infuses me with the energy I need to take on any unfinished projects that I’m too weak to tackle during the day: thank-you note writing, bill paying, e-mail responding, closet cleaning, etc. Friends always ask me to clarify how wine (a depressant and, therefore, a sleep-inducing agent) can stimulate me into a whirling dervish-like state of taskmastering (or, as Mom says, “it’s mystifying how it revs you up—damn!), and all I can say is that I don’t know. I wake up most mornings in a foggy-headed lethargy and quietly-contained condition of moderate anxiety that ebbs and flows throughout the day. One glass of wine clears the mental cobwebs and a second relaxes me enough to stop worrying about treatment, money, and jobs. Give me a third and I’m actually quite productive. After dinner, I’m still energized enough to help Mom clean the kitchen before we watch mindless TV and go to bed, usually between 8:00 and 9:00. The next day is frighteningly similar to the previous and the weeks begin to meld together into a succession of blah. The disappointing exceptions typically occur in my off-chemo weeks when my counts are low enough to yield to an illness and my days are consumed with vomiting, sleeping, and hallucinating. When that happens, I once again beg for the aforementioned mind-numbing, monotonous boredom.
You’ll recall that this wasn’t always the case. Yet, as treatment nears its end, there will be even more hours spent sleeping and reading and fewer passed with any blog-worthy activity. However, I can report that I am so unbelievably excited for my initial cancer-free declaration and subsequent cancer-free daily endeavors which will, assuredly, be infinitely more exciting and reportable than ever before. Example: First mile walked (and later jogged!) without stopping, first public venture without head covering, first date sans malignancy, etc. One cancer survivor told me, “When you’re finally done with chemo you won’t believe how good you feel. Every day you’ll wake up with more energy than the day before and you’ll be so excited to do basic things. Small things will be huge accomplishments and you’ll never take your health for granted again. You’ll go through a health nut phase of working out—just because now you CAN, eating the food pyramid precisely, and taking your friends up on every opportunity to go out. It’s truly miraculous.” Folks, buckle your seatbelts because I can’t wait to take you for that ride…..

2 comments:

  1. yeah, so excited you've posted. I'll re-post this site on twitter, facebook and myspace.

    Love ya girl!!

    ReplyDelete
  2. Wishing you a big bunch of white blood cells! And medicines that work and make you better :)

    ReplyDelete