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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…..

Ringing in the New Year and Toasting to my 30s (Blog 15)

 While friends and acquaintances on every coast buzzed around in text messages and on Facebook about their exciting New Year’s Eve plans involving glamorous black-tie affairs and negligent bar-hopping antics, I spent December 31st getting poisoned and strategizing about which of my new pajamas to wear to usher in 2009. Wednesday’s treatment was shockingly, uncharacteristically fast for two reasons: First, no reactions which, by now, you should find impressive.  Second, of the three chemo drugs I take (I should take four but one is completely intolerable and is instead supplemented by high-dose steroids), one was yet again unavailable and I would therefore have to return the following week for my dose of Vinblastine (the “V” of ABVD). My nurse, Shannon, suggested to my doctor that I miss the dose just the one time and pick up again in two weeks, but General Wilksie would hear none of that. She remains steadfast--the stickler, she is--when it comes to adhering exactly to the Hodgkin’s standard protocol and insisted that the usual dose be administered--albeit a week late and to hell with any latent side effects it may cause in my off-week. I was in at 10:00 and out at just after 1:00 (mind you, I didn’t see my doctor for this visit so I have no news to report) and home to rest for the remainder of the day. I am also baffled and incensed to report that, despite my insistence, the nurses refused to piggyback a bag of bubbly to my IV drip. The 14 year old juvenile delinquent in me says “What-EVER.”
I get asked all the time what it’s like in there. I’ll give my best shot at an accurate description of Chemotherapy: The True Hollywood Story. The beige but brightly lit, window-lined infusion room accommodates about two dozen recliners with IV poles arranged in four rows. The nurses, charged with adrenaline, caffeine, and the many homemade goodies supplied by patients and families, hasten around the room from one patient to the next, grabbing the nearest caster-clad stool along the way as they pull up to their next victim. They may check the IV bag, inject a new drug into the central IV line, administer a shot, or disconnect a patient before discharge. Without fail, however, they are cheerful, talkative (unless the patient is sleeping), and able to withstand as much good-natured jabbing as they are able to suffer with dignity the ruthless abuse imposed upon them by those inevitable few bitter patients. It is not uncommon to observe them ribbing an elderly gentleman about the numerous ladies in his life at the senior center, then pause, take a deep breath, and exhale slowly as they turn their attention to the indignant businessman complaining that he is “WAITING…” These nurses possess the patience of a saint.
A back corner of the room houses a kitchenette where patients and their guests can fetch water, juices, sodas and snacks, and a nearby dining table seats patients and their guests collectively constructing a puzzle and/or reading magazines. A portable DVD player and limited selection of videos is also sometimes in use at the back common room or at one of the chemo chairs. A special trademark of the infusion room, however, is the ever-expanding collection of stuffed animals that sing, speak, play instruments or are otherwise interactive with or without warning. You may recall that one patient brought in a stuffed cow with severely swollen red lips that sways and sings “Besame Mucho,” and to which the nurses exclaimed with glee that it was “Sarah Brannon having an allergic reaction!” (PS: The nursing staff has now taken to calling me “Lips”). The stuffed animal collection grows exponentially by the week as each window sill, counter top, and table top is furnished with plush toys. Newbies in the chemo room, allowing their curiosity to overtake sensibility, inevitably press the button on the nearest stuffed animal. In that person’s defense, the hand, paw, or cloven hoof always clearly instructs to “Press Here.” They soon realize that the entire room is forced to listen to the croonings of a cow, crab, chicken, dog, or Miss Piggy. Within seconds, the motion or sound-activation usually provokes at least four other toys to bellow their annoying jingle which, in turn, paints quite the guilty, if amusing, expression of humiliation upon the perpetrator. Without fail, patients and families alike laugh as the neophyte blushes crimson with horror and apologizes to the room for disturbing the peace. We take it in stride and suffer through it together; After all, we were all guilty of committing the same chemo room sin at one point or another—usually during our initial visit. In general, the vibe in the infusion suite is positive and the people are friendly, save a few curmudgeons.
So, there you have it: a glimpse into the ACTUAL act of receiving a healing dose of chemotherapy; also known, on less positive days, as the torture of being plagued by poison. Either way you slice it, it’s really not so bad.
In addition to hanging out in a cheerful atmosphere, I have another positive note to report. After my Neulasta nightmare, I was curious to find out how my blood counts were responding a full two weeks later….particularly when I was feeling a nasty cold coming on. My fear was that my puny physical state of affairs was indicative of my biological state of shit. With a cursory glance of my lab workup sheet behind the nursing station, Nurse Shannon shouted across the room, “It looks great!,” then qualified: “Well, you’re anemic and your platelets are low by regular standards but,  I mean, that’s really good for you. Your white count is…..WOW!.....9.0!” This type of language was significant—enough to elicit smattered applause from various other patients who were awake and, well, cared
  (can you blame them if they didn’t?). This was so significant, in fact, because it was a nearly immeasurable 1.4 only two weeks prior and was now on the high end of normal. All the pain I had endured over Christmas was not in vain (vein? Sorry for the pun—you know by now that I cannot resist) and my white count was rockin’ even more than that of most healthy individuals. My cold had NOTHING on my white count, my immune system was a fortress, and I was Superwoman. Hell yes. By the way, the braggart in me would like to inform you that a normal WBC range is 4.5-10.0.  
Later that night, to satisfy my seemingly insatiable Chinese cravings, I cooked up some chicken fried rice for our New Year’s Eve dinner, drank a few glasses of wine, and curled up on the couch. Mom eventually popped open a bottle of champagne and we toasted to 2009 at the octogenarian’s midnight of 9:30. While she went to bed shortly thereafter, I stayed up until 1:00 or so, happy to curl up in my warm bed, safe from the lunatics on the road. I have always been very superstitious about New Year’s—and really nothing else—tending to overanalyze my decisions on New Year’s Day as a precursor to the coming year. It all started during my childhood with the southern tradition of eating black-eyed-peas on New Year’s Day for good luck. As an adult, every year that I haven’t abided this tradition has beckoned a looming cloud over the entire day. Would this set the tone? Am I inviting trouble? Furthermore, people have often gasped in horror when I’ve dared to admit ignoring this very serious decree, thus propelling me into an even greater state of anxiety. Yet on New Year’s Day 2009, I woke up with a crappy Day Two cold accompanied by red and watery eyes, sneezing, coughing, and that froggy voice that implores people to steer the hell clear as if I were donning an orange caution sign. Still, I was excited to attend a party at the house of a local family friend. You will recall that, with less than 24 hour’s notice, Sheri acted as stand-in mama for me when I had my biopsy and scans on September 9th. I will forever be indebted to her as she held my hand, spoke with the doctors, and kept my mother informed throughout the stressful (and distressful) day. Dear Sheri had no idea what she was getting into upon first meeting the Brannon Duo: Cross our paths and you will indisputably partake in needles, monitors, and hospital beds. We aim to keep things exciting.
             
Sheri’s New Years party accompanied by 
my Mom and a bad cold
Sheri’s party was so special for me for a distinct reason. On September 9th, the harrowing biopsy day months before, I had explained to her that my primary care doctor suspected on the previous day that I have Lymphoma. Sheri excitedly responded that she participates in Team in Training for the Leukemia & Lymphoma Society and is therefore familiar with that particular type of cancer, reassuring me that it is very treatable with a favorable prognosis. Throughout the fall and during my initial diagnostic and treatment stages, she told her TNT friends about me, even plastering a picture of me on a poster board they were presenting as encouragement for one of their runs. On New Year’s Day I was finally able to meet these people who so unselfishly give of their time and energy for a great cause that is obviously close to my heart. We arrived, turkey-cheese balls in tow and dripping noses to boot (but I wanted to shout: “It’s totally cool! I have a 9.0 WBC count!!!”) to a festive house full of runners and non-runners alike noshing on food and sipping wine, mimosas, Bloody Marys, and beer. I met a woman who sells a specific cancer drug for a pharmaceutical company, as well as a 4-year breast cancer survivor, feeling connected to these new people who have inadvertently walked (or run) into my life. We chatted, laughed and, after a pathetic 90 minutes, I gave Mom that knowing look—perceptible only to her--that conveys my utter exhaustion. And so we returned home, bellies full and head colds raging. We moaned that we’d Never. Eat. Again --or at least the remainder of the day--but I was absolutely astounded AND amused when my stomach began rumbling and growling.  “Oh dear God. It’s the steroids! I’m actually hungry again,” I groaned. “How can this BEEEEE????” And yet, it be. I was undeniably, irrefutably starving by 7:00 and found myself shamelessly hitting the leftover fried rice while mom watched (undoubtedly dumbfounded).
That night, as we were checking e-mail and unwinding after a long, hard day of eating, the phone rang. It was the woman who had originally put me in touch with my former future boss (FFB) at the spa. They had talked during the previous days and she had insight for me after their informative conversation. Kindly, she thought I should be “in the know.” Oh thanks for enlightening me since it’s….well….about me and my livelihood. In sum: my FFB wants me to get better. She sees me running her spa some day, but at this point needs someone in the office at all times, not at home. “Why,” I asked rhetorically, “has she not told me this herself? I have left her voicemails and e-mails and I would expect the courtesy of a response.” The woman agreed and insisted that I would hear from my FFB “any day now.” With any luck I will get better and the woman will employ my services on the spot. Until then, she said, she hopes this brought me closure but that she’s sorry that it had to end this way, at least for now. “You don’t want to work for someone like that anyway,” my mom soothed. Right, I thought, throwing a mental hissy fit, but shouldn’t I be the one to make that determination? Avoiding my communication just felt….wrongYep, I was a woman scorned. So much for the notion of completing projects and doing consulting work for her at home for rent money and something exciting to do.
In short, I made my foray into the new year with few surprises but have decided to err on the side of positive thoughts. For example: I’m not starting ’09 as a cancer patient, I’m starting—and finishing--as a cancer survivor. As well, I didn’t spend January 1st fighting off a miserable cold, I spent it in the company of new friends and my mother, the person who means the most to me in this world. I ate my black-eyed peas for good luck (although, as I’ve said, I tend to shun the idea of luck or fate), and joked with others that this year can quite literally only get better from 2008. Within a few months I’ll be cancer-free, once again gainfully employed (God willing), and restored with a fresh spiritual and physical awakening. Great things are in store for me. If I keep repeating that, it has to be true…..
On a totally unrelated note: After two full days of resting and reading (read: simmering in chemo and rhinovirus stew), I was not surprised to get a random text in the wee hours of Friday night/Saturday morning. I typically get drunken anecdotes from the likes of my 25-35 year old single friends over the weekends and have grown accustomed to silencing my phone for that reason. This time, I forgot. It was an unknown number and all it said was, “Hey Sarah.” On Saturday morning I noncommittally responded, “Hey back.” The stranger texted me that I had met him at Highlander the night Adam was in town and we had celebrated his arrival with a jaunt. He asked how my cancer treatment was going and if my hair was coming back yet. I found this unbelievably funny as I realized that, once again, I had made too many friends during one of my infrequent social opportunities and turned into an information slut. Somebody stop me.
Mom left on Saturday and I spent Sunday doing nothing or, at least, very little. Months ago, a friend of mine had subscribed me with the group ChemoAngels (www.chemoangels.net) when I was first diagnosed. Chemo Angels assigns two volunteers per patient and those individuals are charged with sending cards, packages, and e-mails intent on motivating us to continue fighting our respective Big C battles. One of my angels quickly learned that I have much affection for the following: chocolate, books, dachshunds, and girly stuff. In short, I have come to appreciate packages including the likes of paperbacks, cookies, dachshund paraphernalia (note cards, Christmas ornaments, dog treats, etc), pajamas, and candles. These people really are amazing having answered the call to bestow unrequited support upon complete strangers. They are blessed with loving unconditionally, even without reciprocated acknowledgment seeing as the patient is under no obligation to respond. Thus, I spent Sunday and Monday reading a book that Angel Kelly had sent my way: Marley & Me. I felt grateful to escape with something lighthearted and relatable as I fought a cold and blasphemed my decision to coddle my sniffling nephew over Christmas.
For my 30th birthday on Monday night, Nancy picked me up with tuaca-laced hot apple pie in hand and whisked me to the San Antonio shopping mecca known as La Cantera and, more specifically, to its deep inner sanctum of Sephora. We spent over an hour amongst colorfully saturated pots, powders, pigments, polishes, potions, and lotions. Nancy gave me a budget from “the girls” of $100; I think I may have spent $98.76…..always one to go above and beyond. Note: For all the girls out there, my new loot consisted of black shimmery nail polish, purple-black shimmery nail polish (a subtle but distinct difference), highly coveted replacement Shu Uemura eyelash curler—a necessity since I only have about 40 lashes left, and a shimmery, silvery eyeshadow. Most importantly, however, I was able to score some really good sugar scrub for my scarred body….especially since Joanna took one look at my chest and thighs over Christmas—as I exited the bathroom wearing only a towel--and gasped in horror at the discolored, dark brown gashes marring my body from scratching my itchy skin in the middle of the nights during the first few months of chemo. With time and baby oil, I am starting to look less like an unfortunate barbed-wire, fenced-in prison camp escapee and more like a mere heroin addict (or so I’m told; For those of you unfamiliar with heroin addict behavior, please visit your nearest crack house). Perhaps Nancy said it best, though: if you don’t leave Sephora looking like a streetwalker you’re not doing it right. And that we did. In our valiant attempts at creating the illusions of smoky eyes and subtle shimmer, we both independently managed to replicate a facial cirque du soleil…..applied standing up….with shaky hands…..leaning over a countertop that reflects questionable lighting. On our way out, I actually heard a male employee call out, “Do you need some tissue?” I looked up with humiliation, only to realize that he was targeting the mother of a four-year-old boy who had spotted the Dior Addict Scandalous Fuchsia. My (understandable) mistake…
After Sephora, we met four other girls for dinner at PF Chang’s and I’m pretty sure I ate more than I’ve ever eaten in my life. We ordered drinks, two appetizers, five dishes, one huge dessert and individual tasting desserts. Plus, now that the secret is out that I’m a bona fide wino, I took home three bottles of red along with a yummy vanilla candle, makeup brushes, perfume, and…..perhaps best of all…..fake tattoos. We decided that I needed to apply the Biohazard symbol tat across my medi-port for the nurses’ entertainment at my next chemo, or an electrical outlet on the back of my head to demonstrate where I plug in at night in order to achieve nuclear regeneration for my frequent chemical doses. Thoughts???  I returned home that night to peer in the mirror and find that my silk scarf had slipped, adjusted, readjusted, and bunched all over my dome to the point of resembling some kind of Hari Krishna formal-wear head ensemble. Note to all: WHEN THAT HAPPENS, LET A BALD SISTER KNOW!!!! Visible widow’s peak, more than 50% of either ear, or scarf flips are simply unacceptable.
Back in the clinic on Tuesday for Vinblastine, I met a sweet retired Jewish Texas implant from New York. She asked about my scarf. We joked about the troubles of headwear given last night’s wardrobe malfunction, and then she asked how I stay so positive. Me? Positive? I gently let her down gently that I have a raging cold, no job, no money, and no energy, and thus feel anything but optimistic. “You seem so content though,” she insisted. I thought about it and said that I didn’t have much of a choice. It is too taxing to be angry all the time, and whining about how lousy I feel only makes me feel worse. Out of sheer selfishness I am forced into a state of complacency. She nodded slowly and said, “Well, if it makes you feel any better, you look great.” Then she leaned forward and said in a hushed voice, “Look, before I went on steroids I lost so much weight that I was skin and bones so what did I do? I went to Frederick’s of Hollywood and bought me a tush. Now I tell my husband that I’m a different person in the mornings than I am during the day: My face is in a drawer, my boobs are on a shelf, my tush is in a drawer, and my hair is in the closet. I need my entire dressing room just to put my parts together.” And this is exactly the kind of commiserating and unconditional support cancer patients provide each other; this woman is representative of precisely why I was able to drag my sorry ass home and laugh about the baby chick fuzz growing on my scalp (actually, picture an infant bald eagle with singular follicles sprouting from its otherwise naked head….and there you have me).
I was exhausted on Tuesday afternoon and returned home to eat a sandwich, walk Lola, and sleep all day, all night, and for the next two days. It hit me on Wednesday that, once again, I was sick. Just as I thought I was getting over a bad cold, something else had overcome me and I was relegated to a state of alternately puking and sleeping, barely able to hold a conversation and barely able to read a paragraph in my latest book. So much for my 9.0 WBC count fending off any weak, puny, insignificant little germs (although, by then the Neulasta shot had worn off). This continued until Friday, at which point I woke up fatigued but otherwise rejuvenated, ready to face the world and a kick-ass weekend. Mom arrived around 2:00 and we jointly prepared for much-needed girl time with my cousin Taryn and my aunt Leigh Anne. We had a fabulous weekend planned: they would arrive on Friday evening for a leisurely Italian dinner and DVD, we would spend all day Saturday at a local day spa getting pampered and feeling like the royalty we perceive ourselves to be, consume mass quantities of Mexican food and margaritas on Saturday night, and top off the weekend with a fabulous brunch on Sunday. What could go wrong???? Except, of course, that I was getting over a flu-like illness whereupon my entire body ached—and was sensitive to touch—and I could barely take a shower, let alone engage in a day of beauty that necessitated movement on my part and expert manipulation on the part of a masseuse. I reluctantly cancelled my portion—a Dead Sea salt rub, one-hour Swedish massage, and European facial--which was to be a birthday gift from Mom, and got ready for our guests. I say “our” because Mom has now moved in and claimed my apartment (and as well she should as she is now paying my rent).
On another note entirely:  I’ve decided to let my hair grow. Over the last few months I’ve had it shaved every few weeks because it regenerates as quickly as it falls out, resulting in an impossibly uncomfortable itching sensation. The combined forces of Olay in-shower body lotion (don’t get me started on how much I love this stuff) and baby oil has lessened much of the discomfort of chemo-induced dry skin and hair loss. Thus, I’ve determined that I’m close enough to the end of treatment to endure the irritation and allow it to grow. I mean, really….the sooner it cultivates, the sooner I can endure the crazy hair stages. I know a cancer survivor who was innocently buying milk and butter at the grocery store two months after the end of her treatment. At the checkout line, two high school girls behind her tittered endlessly; after a few seconds of their rude behavior, she tuned in to hear that they were laughing at—and making jokes about--her hair. “Nice haircut,” one said. “She looks like a dike,” the other added. Finally, she turned to them and said, “Thanks….I have cancer.” Reportedly, they looked stunned and turned away, embarrassed that they had unknowingly disparaged a cancer patient. She warned me to expect that and to prepare myself for similar encounters. BRING IT ON. Wish me luck on my hair growth endeavors.

Happy Holidays or Bah Humbug? (Blog 14)

On Monday, December 15th I decided to take advantage of the Christmas spirit by concocting my self-proclaimed “famous” homemade Snickers bars while watching National Lampoon’s Christmas Vacation (Clark Griswold, anyone….or, better yet, Uncle Eddie?). This candy takes all day to prepare given its dozens of tedious steps and I thus refuse to make it except at Christmas and Independence Day. I should note that I have been instructed by certain family members not to bother attending said events without that damn gooey goodness. So there I was melting chocolate on the stove when, for the fifth or sixth time, I heard what I thought was a cat meowing with bitchy demand. I walked to the porch to see if I could identify its approximate location and I heard it again, but this time it was a clear “HELP!!! HELP ME!!!” Without thinking, I threw my half-eaten banana on an end table and bolted out the door, only to find a beautifully dressed elderly woman collapsed on the sidewalk in tears, lipstick smeared and mascara stains running down her face. It was 38 degrees outside. “I fell!” She exclaimed when she saw me, further stating that the last time she fell she shattered her hip. I tried to lift her with her arms but her knees wouldn’t hold her own weight, so I knelt down and told her to put her arms around my shoulders. “You can’t hold me,” she warned. “Yes I can. Hold on to me and, no matter what, don’t let go.” I pulled her off the ground and got her to her apartment when I realized that I was bald and wearing Jockey sweatpants and TCU sweatshirt…not exactly the image to portray when meeting someone new for the first time (let alone a sweet old lady), yet I realize she was in no position to protest. She thanked me no less than five times and I walked back home, suddenly aware that I had absolutely no energy left…I was drained. Furthermore, I was left with only one thought: Somehow, some way, I had the strength to lift this dead-weight woman. After months of accepting help from others and feeling like I have nothing to give back, I was able to help someone else using reserves I didn’t know were there. As sad as it was to witness this woman’s despair, I felt honored to help someone else and I feel like it was a gift from God reminding me that I am still good for something (although she may not say the same…).

Mom arrived on Tuesday afternoon as I was baking cookies for the nursing staff and chicken tetrazzini for our dinner (and, at the risk of being labeled a total nerd, listening to Christmas music and inhaling the scents of cinnamon and pine candles). After dinner we decided to hit the suburb of Windcrest to view their amazing Christmas light displays, stopping at Starbucks for a Peppermint Mocha latte along the way. The lights were ubercheesy but festive and gorgeous nonetheless—especially given that it was 34 degrees outside and we were bundled into a heated vehicle donning wool coats and gloves. When we returned later that night, I found a heap of bags at my door. My friend Nancy had played Santa and brought over Gatorade, ginger tea (both great for puking—staving, not inducing), red wine, lemon pound cake, bananas, chocolate pudding, and a squeeky toy for Lola. I couldn’t have been more touched by her generosity and have since deemed her my Straight Female Christmas Elf (Adam is my Gay Boy Christmas Elf). I went to bed by 9:00 but woke up with entirely too much energy at 3:30. After lying in bed for an hour I read for another 30 minutes, then turned out the light and remained awake until my alarm went off at 7:00.
Even though my pre-chemo labs were scheduled for 9:35 and completed by 10:00, the nurses couldn’t seem to get a blood return on my port once again, which meant that I had to lay down and assume the ridiculous postures necessary to tease, influence, and nudge the internal catheter. This process took another 30 minutes—and was finally successful—and I had to then wait another half hour to complete my vitals and doctor appointment. Too many people have asked me to explain the blood return bit of each treatment, so I’ll attempt my best here. If the nurses don’t make sure the blood is coming OUT (back into a vile), they risk not knowing that the port or catheter may be misplaced. Worst case scenario: the needle or internal structures have moved and the chemo leaks into the tissue/skin and not the vein. That would mean serious damage as the chemicals burn me raw from the inside-out. With blood return, the nurses can be sure that everything is in place and nothing is getting obliterated, scarred, or otherwise irreparably damaged.
Dr. Wilks informed me that we would definitely ditch the Bleo because the reaction I had during Adam’s visit could be fatal next time (no bueno). Instead, she is putting me on………(insert trumpet fanfare)…..PREDNISONE. I found it noteworthy that she said it with a grimace and slow tilt/shake of her head, as if to preemptively apologize for the #$%! I was about to endure. I asked what to expect in terms of side effects and she said something to the effect of, “Oh, you don’t know…….Okay, well a lot of water retention, hunger, irritability, weight gain…..” she eventually trailed off. I wanted to cry but didn’t because, as my mom would say, I was wearing my big girl panties. On a brighter note, I did get my lung study and echo results back and all are good….Cheers to no permanent lung toxicity and/or congestive heart failure!!! I had arrived at my appointment bearing my homemade Christmas gifts and briefly considered confiscating them out of spite until I reasoned that Dr. Wilks does, in fact, hold the key to my recovery. Plus, she rocks despite her consistently bearing bad news. DAMN YOU, IMMUNE SYSTEM!
1940s warning against Mustard Gas--the exact SAME thing as "Nitrogen Mustard"--the technical, chemical term for the chemical warfare agent that is now used in my chemotherapy
I had to wait about two hours before my chemo was mixed in the pharmacy and a nurse could administer it. We later learned that, like me, many patients were trying to get their treatment over with so they could recover and enjoy the holidays, not to mention that one particular physician scheduled ALL of his remaining patients to be seen that day before he took vacation. I got Marian (or rather, Marian got me) and she very quickly informed me that one of my chemo drugs is not available on site because it is a rarely used drug and only used in my case as a replacement for Dacarbazine (the “D” of ABVD). I’d have to come back the next day for the final component.
Furthermore, I would have to start the antibiotic Levaquin immediately because my white count was so low that I essentially had no immune system….just a few little white cell guys roaming around aimlessly in my body, looking for their deceased colleagues. I asked why she would put me on a week’s worth of antibiotics instead of making me get a WBC booster, to which Marian responded that…oh yes….I will have a shot of Neulasta as well when I return tomorrow. Please refer back to my previous post about the reprehensible, flu-like side effects of this so-called “wonder drug.” Now I was REALLY ticked off at my immune system. What the hell do I keep you around for???? We were finally out of there at just after 3:00 and I thought I was going to get sick in the bushes on the walkway to my door. Luckily, slowly consuming ginger tea and assuming my position on the sofa helped to alleviate the stomach tap-dance.
Makeup: The Ruby Collection

That afternoon, after I attempted to sleep but got absolutely nowhere with that grand plan, I heard a knock at the door and it was my favorite visitor ever: The lovely brown man from UPS!!! (Note that I also welcome the purple and orange Fed-Ex guys and the yellow and red DHL gentlemen). Furthermore, the box was from my favorite retailer ever: SEPHORA!!!! Rene’ had sent me a gorgeous makeup kit from Bare Escentuals called the Ruby Collection. Need I go into great detail how much I played with my new toys? I was a kid in a candy store and loved applying the goodies with total, reckless abandon. Later, as I was feeling better and my nausea gave way to crazy food fetishes, and despite my insatiable craving for a greasy cheeseburger with mushrooms and grilled onions, Mom decided I needed a “healthy, nutritious” dinner of roast beef, mashed potatoes, and peas. WTF??? After dinner we drank a Christmas favorite: Hot Apple Pies (steaming apple cider, Tuaca, Cool Whip--in a can of course--and a healthy dose of ground cinnamon…..fabulous!!!).
Effects of Nitrogen Mustard on soldiers. Yes, that's what is administered to me. Niiiiice....
The next morning we started moving and shaking at a reasonable hour, in time to leave early enough to drop off some chocolate treats with my primary care doctor. She is always so busy that I found it prudent to call in advance and explain to the receptionist that Dr. Gonzalez had originally, preliminarily diagnosed my lymphoma and that I needed to give her a hug in person. The staff ushered me into a back room and my mom and I waited for a few minutes before she burst through the door, her receptionist calling out “Surprise!” in the background. After many hugs and niceties, she informed me that she reads regular consult notes on my progress and is stymied by my body’s ability to keep everyone guessing. We talked for about ten minutes and then it was off to Chemo: Part Deux. This time was fairly subdued as I was administered saline, nitrogen mustard, and the dreaded Neulasta shot on the side of my stomach (which, a week later, was still bruised, thanks). The nurses instructed me to stay at home until Monday and, if I absolutely had to be out in public for any amount of time, I was under strict regulations to wear a surgical mask to protect me from any airborne germs. At around 1:15, we took advantage of my short window of time with regard to energy and headed to Stone Oak, a northernmost suburb of San Antonio, to visit my former employers. Again, with goodies and card in hand, I gave hugs, said hellos, and then suddenly hit the proverbial wall of tolerance. With very little notice I found myself physically draining of energy in the waiting room before Mom was taking me by the arm and leading me to the car. Like the previous day, we were home by 3:00 and I was left to stew in agitation. I passed the time by playing a few dozen games of Bejeweled and making phone calls. As much as I would have preferred a bottle of wine to help soothe the restless soul, my tastes had rapidly changed (as per usual on Day 2 post-chemo) and the bitterness overtook my desire to relax. (At this point water even tastes as though a packet of Nutri-Sweet has been dissolved into it and my tongue seems to be wearing an itchy, fuzzy wool sweater). We spent the evening hours eating leftover tetrazzini—or rather, she ate while I inhaled--and watching mindless TV. I was supposed to attend a Leukemia & Lymphoma Society support group again but that was obviously out of the question given my recent quarantine.
Yet, despite Mom’s heavy eyelids and yawning, I was still as antsy, anxious, and jittery as usual on Days 1-5 after chemo. It’s got to be the MOST annoying feeling on the planet….or at least in my self-indulgent world. To give you perspective: I become weary but cannot sleep, anxious but cannot relax. Nothing seems to calm me down except for a little aforementioned herbal remedy and perhaps some wine when it doesn’t taste like battery acid. I finally fell asleep at around 11:30 with the help of a sleep aid, then woke up at 1:30, read for 45 minutes, and fell asleep again until 5:30. I must have drifted in and out of sleep because I finally got up at 8:15 feeling the effects of Nuelasta. My entire facial structure hurt: my eyes, nose, cheekbones, jaws, and neck were throbbing. Thank God (but perhaps my stomach lining wouldn’t agree) extra-strength Tylenol alleviated the symptoms within an hour.
Stir-crazy and ready for a change of scenery, I took my third dose of steroids and Mom and I left San Antonio at 11:30 that Saturday, but not without first stopping at our fave, DQ, for a quick lunch, then made our way back to Rockport in time for a short nap and cocktail hour. Let me explain something about Prednisone: In addition to the anxiety provoked by chemo, this high-dose steroid also makes me jittery, jumpy, restless, and irritable. In general, it is pretty awful and nothing really eases the discomfort except--for me, anyway--wine. For whatever reason other alcohol doesn’t help, pot only helps short-term, and Xanax only makes me tired, but no less jumpy. In short: it feels much like enduring a prison sentence in solitary confinement, but my body is the prison and I’m on total lock-down. At these times it is not uncommon to hear me whine: “I just want to unzip my skin!!!” Sneak up from behind me and you’ll likely get karate-chopped, jump out at me and you’ll be hit on the offensive with a projectile object. So, with the inevitable heebie-jeebies, we ate dinner, drank wine (which, on Day 3 post-chemo is sometimes tolerable) and I went to bed…or tried, anyway. I took two different sleep aids, and then laid in bed reading until I was finally able to drift to sleep.
I spent Sunday and Monday wringing my hands, pacing back and forth, and chewing on my lower lip as I desperately tried to find something—ANYTHING—to do. I was successful in helping my mom make rum cake, coffee cake, and peanut brittle, and in playing cards and triumphing at dominos with Mom and Gary by the fire. I am also strangely self-righteous in announcing that I started drinking wine at 2:00 on Sunday afternoon (and 4:15 on Monday but that no longer calls for bragging rites; still, that didn’t stop my stepdad Gary from placating me by rationalizing, “Go ahead and get yourself a glass of wine….it’s Sunday/Monday/day before Christmas Eve/Christmas Eve/Christmas Day,” etc. In my hopelessly optimistic family there is always a great reason to consume…).
Monday was the first day I was officially off of isolation according to my nurses and the timing of the Neulasta activating agents. I was so psyched to hit Wal-Mart for some grand people watching and hideously glorious Christmas sweater displays. I kid you not, I did see one female checker dressed as a sexy elf in green tights and a form-fitting leotard. While we were there, I stopped by the pharmacy counter to see if I could have all prescriptions filled while in town and in my final days of the year before my deductible renews. Embarrassingly enough, there in my scarf-wearing, Livestrong-armband-sporting fabulousness, the pharmacy tech printed out a three page list of my medications. Instead of trying to make sense of it, I leaned toward the plexi-glass and discretely told her that I’d “review the pages at home” and bring back a list of those meds that absolutely require a quickie refill. I’m such a junkie. I later tallied that my “must-haves” will cost me about $200 this month. UNBELIEVABLE! Why these meds don’t also vacuum my floors and do my taxes is a mystery to me. On a positive note, I was happy to have sailed right through the effects of Neulasta, said to be the worst for the first four days after the shot. The nurses had given me daily doses of two OTC meds that, if taken everyday, were supposed to prevent the achiness said to plague a vast majority of patients on Neulasta. So far, if a side effect was even remotely possible, Sarah was going to get it. Was my luck miraculously changing?
Later that night, we attended the Jackson’s annual Christmas party where I was able to reacquaint with and meet a few dozen people who have been actively praying for me and my recovery. Many of them were even involved in making me a prayer quilt on behalf of the First Presbyterian Church in Rockport. It was truly moving to put names with faces and hear their genuine concern. Funny enough, though, I was going strong—laughing, giving hugs, shaking hands, drinking wine, nibbling on appetizers—until I was instantly overcome with fatigue. I positioned myself in a chair—in the grand fashion of a queen assuming her stance on a throne—intending to patiently wait for Mom and Gary to finish with their mingling while overly concerned guests asked if I’d be more comfortable by the fire or laying down in a bedroom. Yet, from the moment we had left for the party Mom and Gary insisted that I let them know when I was ready to leave and, true to form, they obliged my sudden weariness. I think I even held on to my mom’s arm as we ambled out to the car…..suddenly I am 93 years old.
The next day, my Mom’s close friend, also known as my “Mama Susan,” and I went to lunch together as per our annual Christmas tradition. We usually go to Rockport’s Los Comales and decided not to break tradition. The lively conversation was typical of us: what’s going on with our daily lives, how my treatment is going (Susan is a retired nurse), etc., when our full bellies eventually pointed us in the direction of gathering our belongings and waddling out to the car. After paying, we stood up and made our way to the door when I noticed a table loaded with margaritas. At 2:30 in the afternoon, I was delighted to see other people celebrating and imbibing in style—something I have neither the tolerance nor the energy level to do these days (okay, so I did that the previous Sunday but that was a rare occasion and certainly not hard liquor). As I glanced up, I made direct eye contact with Johnny, my brother-in-law, but he clearly did not recognize me and returned his attention to the basket of chips. I instinctively, fleetingly looked around the table again and saw my sister, father, and the woman I presumed to be his new wife. In what I gather as a fight-or-flight response, I grabbed the cute little 1920s hat covering my head (given to me by Mama Susan), tugged the brim further over my eyes, veered in a different direction, and flew out the front door.
“Susan!!!” I hissed. “Did you see who that was????” “No, who?”
“That was John!”
“REALLY???? I kinda thought I saw him. I remember thinking….that man looks just like John. Well what do ya know? Let’s go back in and say hello!” She suggested, laughing, amused, and, at the same time, totally serious. After convincing her that I did not want to confront my father in a public setting—after 6 ½ years of complete estrangement, mind you—me with no hair and a distended stomach, she acquiesced and we continued walking toward the car. Of course, this was not before a waitress smoking a cigarette by the front door told us that anyone we don’t want to see definitely saw us in there. Afterall, it was the middle of the afternoon, on a Tuesday, with only four tables of patrons. My heart was pounding as we discussed the fact that a lousy childhood, bad divorce, and subsequent alienation rendered me without a father for so long that I barely recognized him. Even though I get along well enough with my sister and her husband, and despite the fact that by then I had THOUGHT I’d adopted a laissez-faire attitude about the whole situation, I was clearly not in an emotionally healthy enough place in my life to brazen out a friendly “Merry Christmas” with a table that sat someone who has had such a significant impact on my life. Certainly not then and definitely not there. Instead, I went home and watched the evening news with Mom. At just after 5:00, headlights reflected in the window and we saw Joanna and Johnny careen into the driveway. I hadn’t seen them for a full year.
“Shield your eyes!” I called out from the living room as they hugged my Mom in the kitchen. “Why?” Johnny called back. “I’m BAAAAAALD!” I warned and they cheerfully encouraged me to make a naked cranium appearance. After love and hugs I said, “So, did you enjoy the margaritas?” My sister looked confused, tilted her head, and said, “Huh?” “I was at Los Comales. I was sitting at the next table!!!” I mused.
We discussed specific details and they were astounded, especially because they both noticed the girl with the “vintage hat” but didn’t recognize me as their sister. We attributed it to the facts that they were neither expecting to see me nor used to seeing me without hair: Hat-wearing, hairless Sarah is a new phenomenon to the Garners. After watching more depressing news about the Gaza Strip and devastating U.S. floods, they left and we ate a late dinner, followed by a few harrowing games of dominoes during which I hung my head in shame and admitted defeat.
"Lucyfer" The sweetest dog to hail from Hades
Christmas Eve was an extremely difficult day. I was unusually tired and attempted to read and nap in my bedroom before the house was filled to capacity with family. As soon as I lay down, my chest started to ache but was alleviated when I sat up again. My exhaustion was so overwhelming that I tried to push through the ache and sleep anyway, but my back started to throb. After a half hour or so the phone rang just as I was giving up my pipe dream of a quality rest. It was my sister. Joanna and Johnny had been staying at John’s, my biological father’s house, overnight when Lucy, one of their hellacious yet sweet miniature pinschers, had escaped around noon. They were due to come over before dinner to spend the rest of their vacation with us, but were obviously too distraught to leave without little Lucy, aptly nicknamed Lucifer when she was just a puppy (her min-pin brother Leonard is also known as Osama bin Leonard to honor his terrorist tendencies). Before Mom and I went to Christmas Eve church service, we ran off a dozen Lost Dog signs for Gary to plaster around town, then proceeded to atone for my mom’s many sins (it takes two of us). Despite the communion appetizer of bread dipped into wine, I was famished after church and we headed home for tacos and tamales. What should have been a house full of family, food, drinks, darts, dominoes, and laughter was a comparatively morose affair. Joanna and Johnny called periodically to report that there was nothing to report--in tears of course--and my brother and his family checked in to inform us that, as soon as Scott’s Barnes & Noble closed and they could pack up the kid and car, they’d be on their way—likely to arrive around midnight.
Instead, Mom, Gary and I put on “It’s a Wonderful Life,” ate too much food, and retired for bed relatively early. By 9:30, my nagging back pain was getting worse and a two Zanaflex tablets didn’t seem to dull it whatsoever. Gary was asleep but Mom had decided to watch TV and snooze on the living room sofa while waiting for Scott and Family to arrive. I joined her, erroneously thinking that doing serious yoga stretches on the rug would ease some of the tension in my back and chest. Nothing was helping; the pain was instead becoming progressively worse as the minutes ticked by. I realized that this was not a muscular problem and instead assumed a position on the couch with my mom to allow for a more convenient locale in which she could rub my head. (I realize that this sounds bizarre on so many levels but I have always adored having my hair played with. Now that my locks are gone, I’ve found that the sensation of fingernails against cranium is absolutely divine). Not ten minutes into my much-needed head massage did my brother, sister-in-law, and nephew pull up to the house on schedule. Naturally with a two-year-old it took an hour or so to unload the car and get him settled, during which my back pain veered toward the direction of unbearable. I would find myself grimacing with bad pain, hissing with severe pain, and gripping the nearest ledge I could find when the pain became excruciating. Although the muscle relaxers didn’t alleviate any of the throbbing, both were successful in making me sleepy and, for the second time that night, I tried to go back to bed. Even with a fantastic book, glass of cold water, cuddly miniature dachshund, and ear plugs at my disposal, nothing could overshadow the intense pain. I started to writhe around in my bed, moan without warning, and reflexively grab the sheets as beads of sweat appeared on my head and face. I tried various sleeping positions, various sizes and shapes of pillows placed in various crevices, and various breathing techniques, but nothing would work. After several trips of walking around the house was deemed completely unsuccessful (as was a mouthful of chocolate brownie but that’s beside the point), I started to cry. I returned to the bedroom and contemplated dialing the on-call doctor for about an hour, at which point I finally did. The operator informed me that it was the doctor I had called when I had a fever and infection back in October and who was clearly bothered by my middle-of-the-night nuisance. I thanked the stranger and, out of sheer self-preservation, opted to not have this particular physician dialed. Finally, at 3:15, I tiptoed into my mom’s room, nudged her a few times, and asked her to bring me a Darvocet (Note: she had one of my refills from my port implantation surgery bottled up as a backup for her frequent, nasty migraines). I met her in the kitchen where she leaned against the bar, head down as if in total exhaustion. I began explaining to her that the pain was unbelievable when a stabbing, searing jab sent me doubled over on the kitchen floor. As I was groaning, she began moving her descended head back and forth on her forearm, as if to express her motherly frustration and sadness at her daughter’s pain. “Mom, it’s okay. I just need medicine. I’ll be okay,” I reassured her. She continued to sway her head, so I walked over to her (still moaning and holding my back), to show her that I was, in fact, going to be alright….although I wasn’t quite sure of that myself. Standing behind her, I suggested to her that we go to my bedroom where we could talk on my bed. As she straightened up off of the bar countertop, her arms instantly flew up, her eyes snapped shut, and she fell straight backward onto the floor. She had passed out cold. Picture this: A mother wearing a robe passed out on the freezing kitchen floor and her bald daughter writhing in pain, leaning down at her side to rouse her. This all happened in whispers, in the wee hours of the morning, on Christmas Day.
I was finally able to lightly slap her awake and lure her into my room. “What the hell just happened?” I insisted. After a few minutes of discussion, she convinced me that she had gotten up too fast when I woke her and her blood pressure had never elevated. I was completely deflated to learn that it had nothing to do with me and her immense concern for my well-being. Okay, not really….I was actually relieved to know that she was her usual, “let’s-fix-this” self, particularly when the color returned to her face and she felt normal again. She sat beside me on the bed and rubbed my back as I doubled over in an attempt to stop myself from crying out and waking the household. I explained to her that, although I’ve never been pregnant, what I felt was exactly how women describe hard back labor. She put my cell phone in my hand and encouraged me to call the answering service. The doctor answered, mystified and groggy, and I profusely apologized for bothering her.
“It’s okay,” she soothed. “What’s going on?” Hmmm….now this is quite different than the horrifically bitchy woman I had encountered months prior.
“I’m a patient of Dr. Wilks and I’m in….(pause)…..severe…..(moan)….sorry…..hang on……(deep breath)….pain.”
“Okay. What’s your diagnosis and when was your last treatment?” She asked kindly.
I told her everything in labored breathing, including the fact that I had had chemo the previous Wednesday (exactly a week prior) and a Neulasta shot on Thursday. She explained that, even though it had been awhile since the injection, the sudden insurgence of new blood cells forming in the depths of the bone can cause pain. In rare cases, it can feel like a drill boring into the bones for up to a week straight. HARK! That’s exactly it: someone has provided an accurate description for my suffering. It’s as if someone were taking an electric drill to my back and chest and pressing the “on” button with fury and unpredictability. It was like one long, constant bone marrow aspiration except I didn’t have Schedule I narcotics onboard to get me through it. The doctor told me to go ahead and take a Darvocet (which I took the liberty of translating to 1 ½). She said she’d normally call in morphine but the pharmacies would be closed tonight and tomorrow and that I should go to the ER for even stronger meds if the pain hasn’t subsided. Beside that, she said, it could be more serious and require observation if morphine doesn’t help. After we hung up, I took my medication and, despite Mom’s protests, sent her away. I explained to her that one of two things would happen: I would either sleep out of sheer exhaustion or forcefully lay awake in agony; either way, I’d need to get through it alone. After about an hour I fell asleep but woke up from time-to-time to my own strident moans of distress.
I’d love to report that, on Christmas Day, the entire family unit woke up at a decent hour, sipped coffee and noshed on some baked goods, opened presents, ate a massive late afternoon Christmas dinner, and pleasantly lazed around for the remainder of the evening. I’d like to tell you that, but it would be a blatant lie as my Christmas at Casa Brannon was nothing of the sort. I woke up at 8:30 to a quiet house: Mom was getting herself ready in her bedroom, Gary was searching for Lucy on the roads of Rockport, Joanna and Johnny were still at the other house (presumably either crying, searching for Lucy, or both), and, despite dim illumination behind their bedroom door, Scott, Sarah, and Baby Brannon were only slightly audible and barely moving after their long night. My pain had diminished from a 9.5 to a 7—still very bad but no longer totally unbearable. I calculated that I’d managed about 3 ½ hours of sleep—and only then thanks to muscle relaxers and pain pills. Still, I had my requisite 3 cups of strong, black coffee as the group (minus Joanna and Johnny) slowly appeared and congregated in the kitchen for coffee cake. We occupied Brannon with breakfast, cartoons, and toys while Daddy Scott got the video camera prepared, and we watched as Brannon tore into the living room to see what Santa brought him. At 23 months, he was clearly ecstatic for new cars, books, and plastic sea creatures, but also bewildered at what he had done to acquire such amazing luck. Christmas morning was really about him, although there was an obvious weight on the day with the solemn absence of my sister and brother-in-law, and with my intense pain. There would be moments in a conversation that I would have to stop talking because the stabbing sensation would either take my breath away completely or cause me to cry out loud. Instead, I would hold up my index finger and mouth “just a second” while the rest of my family stared at me in disbelief, then quickly looked away and tried to make casual conversation about the weather, the Cowboys, or a particular shade of green.
After I showered and got dressed, Joanna and Johnny arrived with grim looks on their faces. I hugged them both and they both started crying all over again. The next few hours were quiet as they made more Lost Dog signs, Brannon played with his new toys, and Mom and I cooked. I found that laying and/or sitting was extremely painful, and standing—no matter how exhausted I was—would be my only option at minimizing the pain and functioning at any capacity. Mom kept offering to take me to the ER and I carefully considered it. With only days left on my long-exhausted deductible, I could see an ER doctor for free now that I had crossed the threshold into catastrophic coverage. Yet, the healthcare administrator in me knew that I may have to wait hours for pain management while also utilizing valuable, limited hospital resources. I was struggling with a moral dilemma and decided, instead, to first try my own smokeable form of analgesia. My brother watched with incredulity (or was it pride?) as I openly partook on the back porch in plain sight of the entire family. “Want some?” I offered. He laughed and shook his head, knowing between the two of us that the rare offer may still stand later. Every 90 seconds Mom would ask, “Did it work? Is it helping?” I kept explaining that it would take a little while to know, but that I was clearly becoming hungry. Placebo effect? Perhaps. Steroid effect? Definitely. For a “snack” we consumed mass quantities of homemade sushi with excess wasabi (California rolls for me, thank you, since I don’t do seafood) and continued to cook. My French-baked squash casserole was delish, as were the marshmallows that I so lovingly placed atop the sweet potatoes before baking. Just like that morning, Christmas dinner was also dull as two-ninths of the group was too grief-stricken to eat, one family member found more pleasure in chucking goldfish crackers across the room and smashing his Mimi’s wine glass, and another one of us—who shall remain anonymous--was too busy eating seconds and rationalizing the effects of steroids and chemo to make casual conversation. Instead of the usual bottle-after-bottle of wine, spiked hot chocolate, alcoholic hot apple pies, dessert, darts, dominoes, and other holiday cheer, the family cohesively retired to their respective beds relatively early. We all agreed that this Christmas just sucked. Period.
The day after Christmas, we were lazing around and helping Scott & Family load their car. After a long, boring morning, they took off and the rest of us commenced doing nothing while Joanna and Johnny continued their search for Lucy. At around 3:30, after they had returned, the phone rang. A full 48 hours after her disappearance, Lucy was at my father’s neighbor’s house. As my Mom ran into the guestroom to tell Joanna, I flew out the back door where Johnny was packing their car in anticipation of their trip back home.
“JOHNNY!!! They’ve got Lucy!!!”
“What?” he asked. “Shut up.”
“No….she’s at the other house. They’ve got her. Hurry up!!!”
His face transitioned from a state of disbelief to a crumpled expression of relief and joy as he burst into tears and hugged me.
At the time, my ADHD stepdad who physically cannot sit still was out searching for her, so Mom, Joanna, and Johnny hopped into the car and drove over there, Joanna looking intent and hopeful, Johnny (being the sweet, sensitive one of the two) still sobbing. My mom later told me that she had offered numerous times to drive so that Johnny wouldn’t have to worry about blurred vision, but he insisted, as would any daddy of a missing little girl who had just been found. An hour later they returned, whole family once again intact, and cracked open beers. I opened a bottle of wine and we did what we do best at family gatherings: Commune with the aid of dirty humor and alcohol. The mood in the house was tangibly jovial. Lucy was wet and dirty but otherwise unscathed. In fact, the 5 pound little twit appeared spiritually renewed and physically re-awakened as she exuberantly leaped around from room-to-room, sniffed Lola’s orifices, attempted to steal food from kitchen countertops, and had the nerve to cry in protest as she was denied access to the outdoors…..FOREVER.
I should also report that, as soon as Mom called Gary with the exciting information that Lucy had been found, he stopped at a cheap drugstore to purchase post cards. He returned home before the dog-retrieving group did and the two of us devised messages from Lucy along the lines of: “Leonard said I didn’t have the cojones to run away” (from West Texas), and “Dear Mom and Dad, I am miserable,” and “I hope you got your #$@! together while I was gone—I want to see some changes around here.” We thoroughly enjoyed ourselves as we howled with laughter, dictated Lucy’s responses to each other, and transcribed the cards. When they returned home and Gary “checked the mail” to produce the cards, we watched as Joanna’s and Johnny’s confused expressions gave way to roaring laughter.
By that point my pain was at a 4, which I attribute to a combined result of time (the dulling and slowing regeneration of blood cells) and wine. And yet, with all the Darvocet in my system, I was definitely getting pleasantly woozy. After dinner, while Gary, Joanna, and Johnny played darts and continuously chastised Lucy for The Great Christmas Caper of 2008, Mom and I went to our bedrooms. Joanna later came in to mine, saw Her Majesty Noreen the Wig and Veronica lying on the spare bed, and insisted that I try them on. “You look like a crack whore,” she said in response to Noreen (and before I could properly adjust her on my head), who I had admittedly, carelessly tossed aside for several days. “Veronica’s cute though.” That sealed it: before leaving Rockport I knew that I had to make an appointment with the lady who is known for cutting wigs. That is correct: there is both the “Famous Wig Lady” in Rockport--the woman who sells the hairpieces, and the “Woman Who Cuts Wigs.” If you know nothing else about this town, realize that it is fantastically quirky and embrace its idiosyncrasies.
Joanna and Johnny left on the 27th and I spent the day resting and helping Mom de-Christmas the house. This is no easy task as “Christmas” is stored in the attic in dozens of boxes for 11 months of the year, requires three days to assemble, and is only to be enjoyed for a mere four weeks. While we are often ready for the house to resume a sense of normalcy on the 26th of every year, this time we were saddened. Not only was the season short since Thanksgiving was so late in November, but I hadn’t mustered the strength to retrieve my own decorations from the bottom of storage in San Antonio and therefore didn’t have much time to enjoy its beauty and whimsy. Yet, within a few hours the house had returned to its previous state of “eclectic elegance” (I just made that up).
Many of you have inquired about the job situation. The former new boss returned neither my calls nor e-mails, and at one point told her receptionist to tell me that she is “anxious” to talk with me and would call me back shortly. That was on December 9th. Nothing else is in the works and I literally have no idea how I’m going to get through the next few months. I had saved a lot last year in anticipation of needing a new car (Thank GOD!!!) and those funds will soon run out, but I continue to have faith and pray. I’m also ashamed to admit that I rely on my mom a lot more than any 29 year old should. Yet, God has seen me through challenges before and has never let me down; I don’t envision it starting now. I tell you this not to whine or elicit sympathy, but to keep you informed and to present to the world that if ANYONE has knowledge of temporary at-home work (whether consulting in healthcare, writing, or otherwise), please let me know. I can manage my daily routine quite well and have learned to predict my unpredictable side effects as much as possible. In fact, more than the survival instinct of earning money I long for a sense of purpose and productivity.
I have treatment again on Wednesday and will report back soon. Although New Year’s and my birthday are both next week, I have a strange suspicion that both will be rather subdued this year. You never know though…..!!!!