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Thursday, March 21, 2013

Blog 23: Death of a Friend and True Cancer Warrior: Tribute to Sandel Long

On March 3rd, I learned that a friend has died. With that comes a large amount of guilt (spare me the lectures) and with THAT, comes guilt for feeling guilty in that I know that this is not about ME, but about a wonderful woman who fought a long fight. She did not deserve to go this way—against her terms, undignified, and far too young. Tonight, I wear my Livestrong armband again because I am renewed in my fight against cancer and my yearning for a cure.

Allow me to back up.

Several years ago, Sandel was diagnosed with cancer—I think it originated as ovarian but I could be wrong because, by the time I met her, cancer had hijacked her body and accosted every system.  Originally, and despite her advanced stage even at the beginning, she was successfully treated at MD Anderson and released into the care of the big, bad, non-malignant world to live her life, enjoy a career, and perhaps meet a man who would appreciate her strength. A year or so later, her cancer had returned but, unlike before, had metastasized to her bones, organs, and God only knows where else. Despite the grim prognosis, she continued to conduct her life around a rigorous schedule of work, painting, and cocktail hours, while managing to work into her schedule the annoying inconvenience of chemo, radiation, and doctor appointments. I recall meeting her for the first time in Rockport at our family friend Susan’s house in the summer of 2005. I had absolutely no idea that she was sick, given that her zest for life and sharp tongue masked her illness. To this day, I remember her as the curvaceous blonde with the big appetite, sarcastic wit, love of all things turquoise, and dry humor. I liked her instantly.

Later that night, Mom told me that she has “very bad cancer” and that, in fact, she wore a wig and felt miserable most of the time. I was amazed… can this be? I’ve seen cheesy Lifetime TV movies and read emotional memoirs depicting cancer and, yet, not one of them reflected Sandel: A woman with a quiet resolve to live and an admirable, undeniable gumption (and, needless to say) a great hairpiece—damn!). At that time, I decided to keep close tabs on her (“How is that woman ummmm…..whatdoyacall her???…..Summer? Flip-flop? Sandy?”). Mom would update me that SANDEL was a fighter and holding her own as she continued to battle a very deadly form of cancer. Her chemo often controlled her life, but she was not about to give up.

Even then, in my oblivious state, I was amazed. She was Amazing.

Fast forward three years.

As you may recall, I completed my first chemo on 9/16/08 and headed to Rockport a few days later with Mom at the helm to recuperate. Upon arriving at Casa Brannon/Clouse, Mom peeled me out of the car and gently placed me into my Rockport bed. I collapsed onto the mattress and slept a deep, coma-like REM-cycle for hours. This was not a usual catnap, but an intense slumber complete with bizarre dreams and hallucinogenic visions. I woke to Mom physically shaking me and calling into my ear, “Sarah….Sarah???? Sandel’s here. Sandel just got here!” I roused from my sleep only faintly aware that Mom’s friend had offered her support/encouragement/advice to me and was scheduled to arrive at 4:00.

As a first natural, instinctive question, people often ask which cancer one has or has had. With Sandel, it was a moot point. Those who knew her well were aware that she enjoyed a short remission from her primary cancer but ultimately struggled with a secondary one that had spread faster than the doctors could treat. She sat before me a robust, healthy-appearing woman but was—in reality—dying before my very eyes       . I asked her about this and she said, in her signature, matter-of-fact manner that I will never forget: “Yes, I’m terminal. I’m going to die of this. I just don’t know when….I hope I get better but I’ll probably get worse and this ‘in-between’ phase really sucks!”

As you can imagine, I was in awe.

Here I was, complaining about a disease that demanded a highly toxic regimen of chemotherapy but was also likely curable, and here I was, chatting with someone whose cancer is largely incurable and, given the odds, going to kill her. Sandel kept a straight face during the entire private, “cancer patient only” happy hour. We both drank white wine (although I like red) and she told me what to expect in terms of chemo side effects, other peoples’ expectations, and the emotional toll this would take on my mind and my body. She warned me of the stupid things people would say and I dismissed them as ‘unlikely,’ though she would later prove to be right. She talked candidly of her reproductive issues, family issues, and professional limitations. She wowed me with her ability to remain somewhat objective while warning me of the possibilities that may afflict me as they had eventually afflicted her. She told me that her experience is—admittedly—rare, but also told me that my experience can never be minimized against hers: Cancer is cancer. Chemo is chemo. None of it is fair. She told me that I was worthy of feeling WHATEVER THE FUCK I felt, and that I had every right to demand solace, selfish needs, and anything else my heart desired. She gave me permission to say, “This is what I need for now. Until I get better, I am allowed to be selfish. Get over it.” I silently practiced that in my head, feeling vindicated for letting myself actually experience what I had already felt compelled to stifle.

When Sandel left that day, I morphed into the 1980’s Micromachines/auctioneer man: “Sandal told me about THIS” and “Sandal said THAT,” etc. My mom, having already been friends with her, chuckled with appreciation: Yep, that sounds like our Sandel… This amazing woman was known for being straightforward, direct, NON-politically correct, and just a little bit pissed off in the healthiest possible way. We all loved her for these exact qualities.

I called Sandal approximately two times during my six months of chemo treatment. I can say now that I was afraid that my complaints would pale in comparison to hers; that she would be resentful that my cancer was responding to chemo, and that she had too much on her mind to deal with me. I was assuming something that was absolutely NOT reflective of who she was. I regret that I characterized her as “too busy” or “too sick to commiserate with me” I regret that I did not seek her wisdom more often.

I was hospitalized in late February 2009 for a very serious, deadly, and rare form of pneumonia typically reserved for those with full-blown AIDS. Mom was my link to the outside world and kept friends and family in the know about my condition. After days of collective puzzlement from the infectious disease doctors, oncologists, and pulmonologists assigned to my case, it was clear that I could very well die. Mom was grateful and relieved when two friends agreed to drive to San Antonio and retrieve my sweet, beloved, Little Lola Dog who was grossly neglected during this time (to her credit, Mom would feed and walk her twice a day but Little Lola would otherwise be left alone while I struggled for breath in the hospital). At the time, Lola was 10 years old. She was/is my baby and did not understand the sudden abandonment; she was confused and scared and needed human companionship. Sandel and Susan Lewis (the friend who introduced us years before) drove 3 hours to SA and then 3 hours back to take her home to the Lewis household, sitting in Sandel’s lap the entire time. Lola was clearly spoiled and loved during that time—rightfully pissing off Tiki, the canine matriarch of the Lewis household whose hierarchical position had suddenly taken a drop-kick. More importantly, I was shocked that Sandel had the energy and time to spend a day in my honor. Now I realize that she made it happen because she cared. I will never forget the visual of Mom—awkwardly contorted in her pleather chair in my hospital room—as she tearfully explained to me that her friends (my surrogate mothers) came to the rescue and that Lola was in good hands. Too sick to respond, I just nodded, handicapped by an oxygen mask and freakishly dangerous blood counts. Again….what a sacrifice Sandel (and Mama Susan) made. While I was ill and others around me were constantly fussing about my condition, Sandel was literally dying and trying to alleviate my concern.

A few months later, as I was once again living, working, and functioning among general society (aka the Big Kids Sandbox), I heard that Sandel was struggling. Her leg, now plagued with tumors, was a constant pain (literally) and she was desperate for relief, dragging it behind her like a lead anchor everywhere she went. I called her and she, in typical Sandel fashion, moaned and groaned about her annoying nuisance of an appendage and pain-in-the-ass doctors. Despite everything, she always kept her sarcasm. I remember acknowledging that I was talking to someone who was dying--who in fact KNEW she was dying--and who faced each day with the head-on stare that beckoned: BRING. IT. ON, BITCHES!!!!!

While she was dying and I was still trying to find a place in the real, non-cancerous world filled with people who touted natural reserves of energy and the realistic notion of unfettered hope, I asked her about family and friends who EXPECTED things of us—things like “just moving on,” and “stop dwelling,” and  “not thinking about it,” and “positive thinking-it-away,” and “focusing on the future.” In response, she insisted that I “screw ‘em all.” We laughed about the ridiculous things people say to cancer patients and she also convinced me to commit only to what I was comfortable with, that my body had been through so much that no one can possibly comprehend (which is hard to type because I cannot help but compare my situation to hers). Because of Sandel, I felt vindicated. The next day, I called Mom and she laughed at our discussion, in the manner of, “Yep, that’s Sandal,” and “Wow, you two really bonded!”

Yes we did…in a way that only we CPs can understand.

Eventually, Sandel ended up in the Oncology Unit of Corpus Christi’s Doctors Hospital. Before long, she was transferred to the ICU.
Flashback: If you recall, I once went on a date with a local Rockport boy. While there would be no fireworks, we agreed to stay in touch based on one common bond: Sandel. She had set us up in the hopes that we would hit it off, although we did not. One day, Matt was scared for her and wanted my support…….most likely to tell him that, from my experience, she was going to be GREAT and he didn’t need to worry. Instead, I told him via Facebook what I knew: She was lingering in a state of limbo between two worlds. More directly: She was dying and not expected to recover. We agreed to call each other once we know something—for better or for worse.

Sandel progressed and regressed. Ultimately, her tumor-filled abdomen was the main culprit. Riddled with malignancies, Sandel found herself unable to maintain food or liquids. She wanted the embarrassment and pain to stop and she wanted to done with it all. It is important to emphasize, however, that she expressed to the end that she did not want to die.

From the ICU, Sandel was transferred to a nursing home for hospice-based palliative care. Mom saw her on the afternoon of Wednesday, February 17th with Susan and reported to me that she was very much dying. In fact, she was so morphine-induced that she only responded by intermittently opening her eyes, arching her eyebrows, frowning, and squeezing hands. I would guess that, to some, that’s not much. To me, that speaks volumes. I was scheduled to give a speech at Texas State University (where I had earned my MHA) that night and was heartbroken. Mom was taken aback by my tearful, sobbing response of… “Are you absolutely sure? What makes you think she’s dying? I mean, she’s pulled through many times before!!!!”

She responded, in her own way and as a hospice veteran/warrior, that this really is the end. In accordance with the “typical” death process, Sandel won’t eat or drink. She is unresponsive and her organs are shutting down.

Devastated, I dried my tears in the car as I drove to San Marcos to deliver my “I recovered from cancer and therefore YOU can achieve ANYTHING” speech. My lips were moving and my voice box was activated but, in reality, my mind was stunned silent. Although I didn’t say it, that presentation was obviously dedicated to Sandel. My dear friend Amanda accompanied me that evening and acquiesced as she listened to Sandel’s story on the way there, during a pit stop at Dairy Queen afterward, and on the ride home.

Needless to say, I was grief-stricken.

Sandel died under hospice care on March 2, 2010—having lingered much longer than expected. I hear that it was around 5:15 PM—surrounded by her mother and best friends—but do not know the actual details. She wanted to be in her hometown of Rockport but the nursing homes there did not have the resources to deliver the palliative (ie: pain management) care that she required. Reportedly, her doctor sought prescription analgesics strong enough to require Medical Board approval. He had never prescribed such a strong dose of pain medication in his life, but was willing to do so in the case of a young, terminal cancer patient. Mom and Susan said that she was in no pain when they saw her; that she was, in fact, in a blissful, drug-induced state of euphoria. That is how I choose to remember her, despite the fact that she was--as I was told--without her beloved wig and wasted away to a gaunt, bony, frail shadow of the woman I recall.

I decided then and there to attend her funeral, but Mom said that, according to others, it was to be a decidedly small, private, invitation-only event held early on Saturday morning (this, according to Mindy, their close friend charged with making the arranements). Despite her “suggestion” to refrain from adding to Mindy’s overwhelming frustration and grief, I rebelled against Mom and called Mindy for details—expecting to get a voicemail prompt. When she answered, I slobbered on the receiver and allowed mascara-stained tears to run down my face—despite my personal no-crying-at-work rule. She managed to make me feel like less of an idiot when she told me that she knew how much Sandel and I had bonded and that Mom and I were assuredly on the funeral list. I called Mom and told her that I would be there on Friday and she did not sound surprised in the least. She knew that I was coming, funeral list-worthy or not.

On Thursday night I packed my suitcase. My work, having already paid for it months ago, required that I attend an all-day educational seminar on Friday morning. I decided to compromise. At 12:45, after attending the morning program and eating the lunch my office paid $150 for, I ducked out, grabbed Lola, and began my journey to Rockport. For some inexplicable reason, Les Miserables was still in my car CD player since feeling nostalgic for my time spent in London (I just loved attending the theater and this was my all-time favorite show). For future reference, please note that Les Mis is full of death, dying, destruction, sorrow, grief, and pain. It is not—I repeat NOT—suitable for comforting one thought to be mourning over the loss of a loved one. I cried for at least one hour of the three hour trip and, by the time I arrived, felt exhausted…..and looked haggard.

On Saturday morning Mom and I attended our friend’s funeral. Surprisingly, Sandel’s body was not in attendance seeing as the gorgeous chapel that she had selected for her own farewell was too small. The charming, lovely, antiquated Little-House-On-The-Prairie-esque one-room structure held only 50 people and could never have comfortably accompanied a casket and its requisite pallbearers. The priest--one that Sandel had loved, revered, and asked to officiate her very own funeral service--sweetlv (if absentmindedly and confused--I am not exaggerating when I say that he forgot her name a few times, played the same hymn back-to-back, and referred to her as “not a marshmallow” don’t ask—I honestly don’t have a clue as to what that was all about) greeted us outside the chapel entrance while standing next to Mindy. When I made eye contact with Mindy, I became emotional all over again as reality set in: My Partner-in-Cancer-Crime was dead and now I was attending her funeral. Every time the priest mentioned her courageous battle with cancer, I lost control all over again—why why WHY??? It doesn’t make sense! Why would I live while she died? Why was her cancer hard to treat while mine was “easy?” Why did her body become a vessel of hungry neoplasmic activity while my tumors were sated after a few rounds of chemo? The guilt overcame me again. Yes, I realize this accomplishes absolutely nothing but few people can understand the comparison, similarity, and juxtaposition of our situations.

The graveside service was short—maybe five minutes as the priest blessed the casket and said a prayer committing her soul to God. Then—as soon as it began at exactly 11:00--it was over. Along with others, I said a silent prayer while touching her light pink casket (the whole time wondering whether or not she was really in there. I mean…really? Is it possible?).

The “chosen crowd,” who art blessed enough to be placed on the funeral list, eventually dispersed.

Mom and I met a few other ladies for lunch at the country club; not only is it an ideal way to spend a Saturday afternoon but also because Sandel worked there prior to becoming too disabled to ambulate unassisted. A part of her spirit remained at the country club and so the question begs: Where else on Earth would we honor her? We toasted to her name and then, at my insistence, recounted our favorite Sandel stories. The atmosphere was largely upbeat but we would often find ourselves rehashing her final days….her struggle, her sharp decline, and the nature of her death. Reportedly, her mother and two friends were by her side as she slipped away while under hospice care at the nursing home. She was heavily sedated and—most likely—pain free. Part of me feels angry with myself at not visiting her one last time but, as I’m told, she would not have wanted that. As cliché as it sounds, she would never have chosen to be immortalized as a shell of the fortress the world once knew as Sandel Long. I felt close to these women as I told my Sandel story and they nodded and laughed and said, “That was our Sandel!”
In fact, I told of the first time I talked to Sandel about what to expect from chemo, from strangers, and—well—from nearly every aspect of my new life as a Cancer Patient. I asked her about losing my hair (“how hard will it be???”) and she told me that shaving it off wasn’t the hard part for her—just an organic step in the shiteous process. The hardest part, in fact, would be watching it all falllllllllll out in undeniable clumps. She had told me, “One night, well after I’d lost the hair on my head, I went to bed with my normal arm hair. I woke up the next morning and my arm hair was GONE! It was GONE! It just VANISHED…..POOF!”  Fascinated, I asked, “Did you find little blonde hairs all over your sheets….? Dinner plate….? Clothing…..????”  “NO! WHERE THE HELL DID IT GO…….??? It dissolved into THIN AIR!” She exclaimed this while surveying her bald arms with disgust. This story is not meant to highlight her experience per se but, rather, her expressive nature. She was sarcastic, dry, and liked to talk out of the side of her mouth (much like me). Her eyebrows would raise when she was emphatic, her jaws clenched shut when she was upset, and she liked to talk with her hands. When I  would tell  her about something really idiotic that someone had said to me, she would comment, “What a jackass.” She did not wear floral dresses, pastel-colored scarves (in fact, she hated scarves), and delicate, gold lockets, and she did not talk softly and lower her eyelids in a demure fashion thought to be mandatory characteristics of Cancer Patients. No, she was not what one might expect in the chemo room amidst the scared, weak, and elderly. She shook things up and taught me that I was still the same person as before—just with considerably less hair and a hefty medical bill.

Mom and I both took long naps when we returned from the post-funeral lunch. We were emotionally spent and just a little relieved that it was Over. Done. Finito. I cried softly for a few minutes on the way back to San Antonio but considered that as progress to the gulping sobs and ugly, contorted face that accompanied me to Rockport.

And now, it’s time for me to let go. I can’t bring her back but I can demand, again, that we continue the fight to cure cancer. I’m tired of learning the fates of friends, family, friends of family, and family friends afflicted with any variation of this disease. In Sandel’s honor and in honor of everyone who has lost their valiant fights—we need to continue to raise money, raise awareness, and raise prayers.

Meanwhile, Little Layla Grace has touched my life. She was two years old when she died yesterday (Tuesday, March 9, 2010) of leukemic neuroblastoma. I’ve been obsessed with her battle for weeks now, and devastated by her passing. Please pray for this family and take a few moments to read her parents’ blog depicting Layla’s brave life, valient struggle, and tragic death.

As you will see on this site, the family tweeted throughout the day—for several days, weeks, and months—about
Layla’s regression. Just an example:

Mommy is rocking Layla. She has only opened her eyes once today. Her feet are getting cold too. 11:17 AM Mar 8th via Tweetie


Please continue 2 pray for peace for Layla. Her dad is in her room right now talking to her & comforting her. She is not doing well at all. 5:39 PM Mar 8th via web


Layla went to play with the angels early this morning. Rest in peace precious Layla. 11/26/2007 - 3/9/2010 10:43 AM Mar 9th via web

We must continue to raise funds to fight cancer. One day, as Mama Jackie said, we will have a vaccination that rivals that of Polio. One day, cancer will be completely avoidable and/or treatable. One day, Sandel and Layla and other innocent victims will not die of this parasitic disease.

Thanks and love to you.