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…..how 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.

http://laylagrace.org/

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.

Blog 22: And Yet MORE Hospital FUN!!!

 

Work, training, and daily life consumed my world for the next month. Nothing notable happened until Monday, August 10^th when something seemingly benign started to change my life like a thread beginning to fray. I had no idea what was in store for me.

As I was sitting in my office, typing away on my decrepit computer and tackling various patient, staff, and vendor issues, I started to contemplate the evil building maintenance establishment which was seemingly out to kill me. The temperature was in direct contrast to my own personal thermo-regulatory demands regarding the air conditioning. I am cold-blooded and rarely, RARELY hot. In fact, I’m THAT annoying girl wearing the sweater and coat while asking the restaurant server (or shelf stocker or what have you) to turn up the heat on a beautiful, balmy fall day. I’m the girlfriend--once upon a time, anyway--who would forget her coat and eventually confiscate her date’s jacket (or use it as an excuse to snuggle). I’m the girl who can’t enjoy the movie in the theater because the theater managers obviously use the space to pack meat during off-hours. So, as I was feverishly fanning myself and wiping the glow from my face, I joked with the head nurse and one of the physician owners that I was having another one of my frequent hot flashes. And when I say "another one" I am referring to the likes of standing in the freezer with the door open at the grocery store, having friends fan me when I would suddenly become overwhelmed with drenching sweat, and changing out of my sticky pajamas in the middle of the night. Both told me that it was pretty darn cold considering that the air conditioning was cranked down to 40 degrees (in the tradition of medical office buildings the world over). In fact, Dr. Edwards illustrated by tugging on his lab coat proclaiming, “It’s actually quite cool in here.”  This struck me as totally bizarre and was the first time that I began to consider other symptoms I was trying my best to ignore. At lunch, I approached Dr. Baquero, the young, fun, markedly down-to-earth woman doc who tends to counsel and help some of the other staff members. Upon explaining my current situation, she ran through a host of symptoms. Hot flashes? Check. Weight gain and/or failure to lose weight while exercising daily? Check. Lack of regular period even 6 months after chemo? Check. Anxiety and/or Depression? Check check. Insomnia? Check. She told me that I need to have my hormones evaluated and I left a message for the CCCST nurses to pass along to Dr. Wilks. It went something like this: “Just thought I’d mention that one of the doctors I work for THINKS I might have some hormone problems based on my symptoms….probably  not a big deal but just thought I’d let my awesome medical team be the judge. Thanks!”   

Later that night, I saw that I had missed a call from the clinic. The VM went a little something like this: “Sarah, it’s Dr. Wilks. I worry a lot about hormone deficiency syndrome and this definitely warrants a visit to see me. Please call and schedule an appointment ASAP.”

I googled hormone deficiency and soon after became deeply saddened. I did not sleep that night (which was nothing out of the ordinary, actually) convinced that I was Sterile. Barren. Infertile. Not a Woman. I turned to wine to help me make sense of this and went to bed feeling so, so, so, so sorry for myself. I think I may have even cried a little. The next day –at work--I set my Facebook status to read that drinking one’s sorrows away is never a good idea as I had gotten NOTHING accomplished, felt terrible, and had compromised my work integrity by nursing a hangover all day. I took a long lunch to run errands, during which I was able to make an appointment with Dr. Wilks for Thursday. At least something was in the works, even though my road to spinsterhood was being paved before my eyes and, as we all have come to realize at some point in our lives, KNOWING is better than not knowing. I slept well that night.

On Wednesday, August 12^th I attended a TNT Recommitment ceremony and gave a speech about my cancer story. Since becoming involved with TNT I am asked nearly daily to describe my initial symptoms, how I was diagnosed, and what treatment was like. This was a great forum to explain all of that while celebrating with the “hardcores” (those who weren’t scared off in the first half of training) our dedication to the cause. The energy and loyalty was contagious and, despite my blues, was once again infected--pun intended--with fervent determination. I was ready for Saturday’s 6 miles!!!

I saw Dr. Wilks the next day to discuss my symptoms. She agreed that a complete hormone panel was necessary in moving forward but also decided to move my 6-month CT-scan from September 11^th (my infamous diagnosis anniversary) to August 17^th “in case this is a Hodgkins thing.” By that point I was convinced that I was unable to have children but then, in the recesses of my mind, started to worry that it was, instead, a relapse. I told her how grateful I was to her and that I loved her. We hugged and, yes, I was a little farklempt. On the way home, I called Mom. She became audibly anxious but I convinced her that I was FIIIIIINE. I was not in danger of a relapse and Wilksie was just being hyper-vigilant because she just loves me so. Still, Mom insisted on being there for my follow-up visit and I defiantly said NO. I was going to be OKAY and did not need her to waste the gas and her time to hear something that I could convey on the phone. We continued arguing back and forth until we agreed to disagree: She said the issue was not closed and we would reconvene once I’m most certainly agreeable after a few glasses of wine. Therefore, she told me, she would be calling later in the evening to settle the details. Next time I’m accused of being stubborn, please remind me that I am my Mother’s daughter.

Despite my not eating anything questionable or imbibing in anything alcoholic, I woke up on Friday feeling the desperate need to run to the toilet, dry heaving the entire way. When the feeling passed, I made it to work without incident, but almost instantly felt the overwhelming wave of nausea once I arrived, this time accompanied by shaking chills, dizziness, and body aches. I closed my office door and called Mom, telling her that I was undeniably sick but couldn’t let on to the office. I mean, let’s face facts: I have frequent doctor appointments, was out with a virus a few weeks ago, and am forever the “cancer patient” no matter my official work title.  Mom heard the weakness in my voice and insisted that I tell someone: It was clear that I’m not well and could only do so much work before throwing up and/or passing out.  As she was walking by, the charge nurse stopped to inquire about my appointment with Dr. Wilks but quickly realized how sick I was. She left me alone but soon beckoned me to the other side of the clinic: She had set up a vacant exam room for me with pillow, blanket, “do not disturb” sign, and plastic bag of peppermints (who knew they were good for nausea?). After about 2 hours of desperately attempting to sleep despite the patients, doctors, nurses, and nuclear medicine tech doing their jobs in the surrounding exam rooms, the head nurse came in. “Your Mom is on the phone. She’s been calling and she’s really worried.” I had her bring my cell phone to me and I called her while still huddled in my little manmade cocoon. Even as the phone rang, the pictures danced on the wall and my stomach tumbled. I realize now that they didn’t send me home precisely because they knew I couldn’t drive. After a few minutes on the phone, despite the fact that she had planned an all-day offshore fishing trip with Gary and friends, Mom persisted that she was coming to see me. I was emphatic: “Mother! I don’t have cancer anymore. I’m just a regular person with an illness. You would NEVER have been this insistent before. What’s the deal?”

            She paused for a moment and then quietly said, “Things are different now.”

            I convinced her that she was being paranoid and returned to my office. About 5 semi-lucid e-mail replies later to various vendors, Dr. Edwards and the nurse came into my office, closed my door, and grilled me.

            “I think you have the flu and I wouldn’t be surprised if it’s H1N1—which is swine flu--based on your symptoms and the time of year,” Dr. Edwards said. He quickly called in a prescription for Tamiflu and sent me home. I want to say that I LITERALLY slept all weekend, but that is a huge grammatical pet peeve of mine. Literal means literal. I did wake up a few times between noon on Friday, August 14^th and 6:00 a.m. on Monday, August 17^th. Still, as literal as I can get while figuratively speaking, I slept a LOT. All the while, Mom would call and beg for permission to come. If she couldn’t be there for me while sick with the infamous, media-hysterical swine flu, she wanted to be there for me during my follow-up oncology appointment. I told her—YET AGAIN--that the news would be good and she didn’t need to waste precious gas on something that would be conveyed by telephone. End of story.

 

The joys of Swine Flu.

            I was still pretty pathetic on Monday but had a morning CT scan that I was determined to make. If I was still in remission I needed to know; if I was relapsing it was IMPERATIVE that I know. I mean, of COURSE I wasn’t relapsing….of course. But…..still. It doesn’t hurt to know, right? And, I mean, there are always doubts…..

 

            I returned to work on Tuesday but left a voicemail for Dr. Wilks that I had likely just had Swine Flu but that, thanks to Tamiflu, I was getting over it (miracle drug!) but that perhaps she should take that into consideration when reading my blood counts and CT scan. I never thought I’d be freakish around CT scan time, but I admit it: I was definitely becoming paranoid. I had begun to think that every symptom was a symptom of cancer. In my core I KNEW it wasn’t back, but in my mind I couldn’t help but overanalyze…..  Still weary from the battle my body just fought, I decided to come in during the mornings but take the afternoons off to recuperate. Dr. Wilks called me back late on Tuesday afternoon while I was sleeping and, when I answered “hello?” she simply said, “STOP GETTING SICK!” I laughed and she said, “Can you feel the love? I’m insisting that you stay FAR AWAY FROM ME but I still love you dearly.”

            “I know you do,” I said. “This is why I love you.”

            “And you better not put this in your blog!” She said. (Yeah, sorry Dr. Wilks. I’m nothing if not a vigilant and honest blogger).

            “So you read it!!!!” I beamed.

            “Yes……AND I KNOW YOU CALL ME GENERAL WILKSIE!!!” Said General Wilksie, laughing.

            “It’s only because I love you and had to give you a nickname.” She pretended to be offended but we both know that it’s a HUGE compliment. I love my Wilksie. We agreed that I would keep my appointment for August 24^th versus gracing the cancer clinic and its vulnerable patients with my germs. Of course, this completely abolished my TNT training plans of spwogging 6 miles. I felt deflated, defeated, and like a total loser. I’m not gonna lie when I say that I considered dropping out. I knew I wouldn’t but I still totally needed that extra encouragement.

On Sunday morning, August 23^rd, I called Mom around 7:00 a.m. after a sleepless night. The abbreviated conversation basically stated that I did, in fact, need her here. I was terrified, even though I did not want to admit it and I cursed that weakness within me. I told Mom that I was scared that the Swine Flu symptoms were really those of cancer but that, in my heart, I knew I was fine. Logistically I had about a 5% chance of relapse (and everyone knows how I do so love graphs, charts, and statistics), but that I couldn’t shake the irrational fear. She told me that after she was fully awake she would call me back. At 9:00, showered and dressed, she informed me that she’d be here that evening. Have I said this before? She is my rock and I’d be nothing without her.

I went to work with full-time Practice Administrator capability on Monday morning but had to return home at lunch where my Mom was awaiting me for my 6-month appointment. I felt fine because I was certain that I was healthy yet, oddly, my blood pressure read 165/100 when the Medical Assistant took my vitals. Perhaps I was slightly concerned??? And yet, Wilksie said that my CT scan looked GREAT (“normal!”). While Mom gasped with utter relief and became teary-eyed, I continued to wring my hands as Dr. Wilks then left for a few moments to retrieve my blood results.

 

Upon entering the room and flipping through the report, she paused. She frowned. She commented something to the effect of: “Oooh, yeah. It’s just no wonder you’re not feeling well! Ummm okay, you’re not producing any hormones at all. Everything you’ve described is right in line with what I’m reading on this report. No estrogen, progesterone, testosterone….” I wanted to cry. I was both elated that my problems were acknowledged, and saddened that my female-ness had all but given up. “This is indicative of someone in full-blown menopause,” she said. I just nodded. I knew. She told me that she’s not comfortable handling hormone issues as that’s not her specialty and encouraged me to make an appointment with Dr. Gonzalez, the wonderful primary care provider who initially spotted the Lymphoma. As my regular doctor, Dr. G would be better equipped to take on the problem and has had success in treating patients post cancer. I was fortunate enough to have scheduled an annual exam months ago, and therefore had an appointment lined up for later in the week anyway. Knowing this, the ride home was astonishing: I felt that I was validated and on the way to recovery. Yet, my fears were heightened: Would I ever be able to have children? Without female hormones, am I really a woman? Who would want me now??? Of course, true to form, Mom spent the evening telling me that it would all be “figured out” now and that this was “good news.”

On Tuesday morning just before leaving for work, I saw my Mom in the kitchen as I was pouring a huge travel mug of coffee and she was going for her first cup of the day before returning home. She asked how I was doing and I laughed that I had a huge, bubbling blister on my ankle. I told her that I remember nicking it the previous night with a razor in the shower but I had never known a scratch to result in anything more than a minor irritation. I had applied Bacitracin and a band-aid and hoped for the best, limping (literally) to my car the whole time. All day Tuesday was fair game for staff fodder. Everyone had a right to ridicule the boss woman for hobbling around the large clinic due to a really nasty case of…a blister. I admit, I deserved it. Dr. Edwards switched my nickname from “Sir” to “Chester” (“Sir” because I was in command of the clinic and he is an extreme liberal who loves to tease me about being a girly-girl while sporting some serious work cojones, and “Chester” as an old Gunsmoke reference to a character who dragged one of his leg behind him). As my foot segued from generally painful to throbbing radiation up my calf, I approached Dr. Edwards and BEGGED him to take care of it for me. He insisted that I should leave it alone (after all, it did appear normal looking and the surrounding area was not hot to the touch) and commenced teasing me. I smiled weakly but cringed at the distress I was secretly in….something had to be done. That night, while painting my toenails, I sterilized a needle and tried to pop the offending blister. It wouldn’t give. I once again applied Bacitracin and a band-aid and went to bed. Attempting to sleep that night was just short of slow, torturous murder. 

I woke up on Wednesday morning with a magenta foot—hot to the touch—and the blister now raging and festering. The difference today, though, was that it was black. Yes, my blister had turned black. I almost vomited. After a shower, I applied a fresh Bacitracin-laced bandage and went to my appointment with Dr. Gonzalez, hobbling from home to the car, car to the office door. I was definitely a mess and in no shape to be vertical.

Back to the main issue at hand, Dr. Gonzalez looked at the labs that I had brought with me and gasped, “Oh dear. You’re not making any female hormones. Like…. at all. Even though they didn’t test all of your hormones, it looks like you’re not producing anything and I’d bet that you’re having trouble just doing daily tasks. Wait…….Oh. My. God…….Your B-12 is low.”

            “I know,” I said. “I’m on injections every month.”

            “No, your B-12 is 256 and needs to be at a minimum of 900-1000. This tells me that you have no immune system, probably feel depressed, and are at high risk for Alzheimer’s Disease in the future.” At this time, she rolled the stool toward me and put her hand on my knee. “This is serious. We need to get this up—and FAST.” I nodded absentmindedly while she insisted that I’ve likely been experiencing memory loss (check), loss of cognitive skills (check), lethargy (check) and anxiety/depression (check check). Dr. G prescribed an estrogen patch, Progesterone capsules, and DHEA. Meanwhile, I was sent home with a very official hormone-testing kit. I was tasked with collecting saliva four times a day in plastic vials and following various other strict rules. I am to send in my specimens using an official air-tight plastic bag wrapped in special plastic bubble-wrap and, a month later, we MIGHT have specific numbers on my hormone levels, at which time Dr. G will alter my prescriptions according to bio-identical typing. Thank god my insurance pays for it as it costs $700-$900 for lab interpretation. And yet, this was absolutely, positively necessary. Without hormones I am also at risk for all reproductive cancers, mental and emotional problems, infertility, among other problems…. Fab.

After she notated the obvious and gave me strict instructions, I showed Dr. Gonzalez my black heel and red foot and she immediately proclaimed that it was infected. No surprise there. In addition to the news that I was reproductively a 65 year old woman, I was also informed that my blister would be lanced and the fluid collected for a pathologist to examine. So sexy and SO what I needed…. GREAT start to a Wednesday. The lancing was actually done by her Medical Assistant as I lay on my stomach, ass in the air, feeling vulnerable to the world. Once again, I lost my dignity. On my way out, Dr. G handed me a box with the specimen tubes, instructions, and other paraphernalia. I went back to work feeling slightly more confident: At least today, despite the immense pain, I was treated and expected to get better armed with ammunition of the antibiotic Keflex, hormones, and self-assurance. World, I’m ready for a comeback. Or, in the words of LL Cool J circa 1991, Don’t call it a comeback, I’ve been here for years.

On Thursday, August 26^th I hobbled into work over an hour late. Despite waking up at the usual time, I required the additional hour to get ready AND to walk Lola as I extended my left foot, swept my swollen right foot, and swiveled my hips. My triage nurses blatantly laughed at me (I feel the love) as I limped around the office. The head nurse arranged another makeshift footstool for me with a pillow placed atop a large trash can. Nothing helped and the pain intensified. I removed the Ace bandage, showed her the nastiness, and delighted in her gasp: My foot was disgusting: The stuff of horror films…possibly some sort of highly communicable necrotizing fasciitis. She instructed me to NEVER GET UP before lunch. Meanwhile, I was on the phone with the practice bank while Dr. Edwards arrived. He could not see the complex foot contraption under my desk and therefore walked away before I could indicate that I was on an important call (and I was) and to hang on. A few minutes later I paged his office, “Dr. Edwards, I usually don’t require my bosses to ‘come hither’ but can you come here please?” In 20 seconds he was opening my door and, like the nurse, audibly gasping.

            “You need to go to the hospital now. That’s bad…..really bad.”

            I nodded stupidly and told him that I’d call my doctor for an appointment.

            “No, you have to go now. We want you better and we don’t want to lose you. I’m calling next door so they know you’re coming.” I called Mom and told her that I was on my way back into the hospital (this time a Methodist facility connected to the office building); she was having her hair done and therefore told me that I’d have to wait my turn (I mean, it is a hair appointment). I love her even more for prioritizing her hair over me (“Sarah, I love you very much but you put these gray hairs on my head. My hair appointment comes first”). Yessss, my Mom rocks….. Not that she needs defending but, in her defense, we both thought I would be treated and out of there in a few hours.

            Mind you this is, arguably, the best endocrinologist in south Texas telling me to go straight to the hospital. Moments later, one of my triage nurses was wheeling me across the skyway to the Metropolitan Methodist Hospital. By then, Dr. Edwards had alerted the ER and they basically whisked me away with VIP status. By 10:30 a.m., Cutie Dr. Larson treated me with antibiotics and morphine. As he said, “I’d give it a 90% chance that it’s MRSA. It looks like MRSA, sounds like MRSA, and acts like MRSA. We’re treating it as MRSA,” MRSA being Methocillin-Resistant Staphylococcus Aureus, or a potentially deadly and very stubborn staph infection. After asking how they will determine it for sure, he told me that a fluid test would be the primary indicator. Since one was taken the day before in Dr. Gonzalez’s office, they were game for proceeding with extreme caution while awaiting the results. 

After two doses of morphine, my foot was still throbbing. When the nurse re-entered to deliver another dose, I asked her if she could first help me to the bathroom. Saline IV’s make me have to pee like a racehorse. She helped me to sit up, I swung my legs over the side of the bed, and then unintentionally cried out in pain. As I waited for the hot pokers to STOP SINGING MY DAMN LEG from ankle radiating to knee, I was shocked (literally—I felt temporarily paralyzed) to find that it only intensified. Tears sprung from my eyes as she helped me into the wheelchair. My foot, ankle, and lower calf were searing—as if being charbroiled. To this day, I still cannot adequately explain what I had experienced, but I know that I have never been in such despair….not even during cancer and the dreaded bone pain from white cell boosters. The nurse helped me into the bathroom and assisted me with lowering my pants and sitting on the toilet. Once again, tears streamed down my face and, once again, I cried out in agony. She left me alone until, from the other side of the door, she heard me wailing. Without hesitation, she opened the bathroom door to find me struggling with my pants. She helped me into the wheelchair, flushed the toilet, and assisted me back onto the bed. For another five minutes the ensuing pain was undeniable. I was in excruciating agony.

At his request, I called Dr. Edwards to update him. When he inquired about how I felt and I responded that the pain was unbearable he said, “I’ll be there in a few minutes.” “No, you don’t have to,” I slurred. “Nope, I’m coming,” he insisted. “I’m in the ER,” I said. “I know—I just spoke with them.” Within 20 minutes, he was pulling open the curtain and sitting at my bedside, instructing the nursing staff to give me “whatever pain medication she needs” and to treat me well. All the while, he was apologizing that he would be out of town over the weekend and not physically able to be here for me. Of course, he still verified that I have his cell phone number and was comfortable with me calling it any time. So grateful for the concern and attention, I embraced him before he left. I am blessed to have an amazing boss: Thank you, Dr. Edwards.



By noon I was transferred to a room in Oncology because, as they explained, I was still technically a cancer patient. Because neither Dr. Gonzalez nor Dr. Wilks admit to, or have privileges with, the Methodist system (Baptist all the way for them), a hospitalist named Dr. Randy Panther admitted me. Back in my room nurses Shad (yes, SHAD, like Chad with an S) and Tiffany gave me more morphine for the obvious pain (there is a cap on the amount of narcotics that can be given in the ER; once followed by a treating physician on a medical floor, the doctor can determine how much to give) and brought in a potty chair. Reminder: I had experienced the aforementioned dignity sapper last winter while hospitalized with pneumonia. When they inquired as to whether or not I’d use it, I said, “hell yeah,” and welcomed the easy route to relief. Thank you, handicapped toilets ;). And, just for effect, I offer you a new visual: By this time, when I lowered my foot from an elevated position, I instantly connected with one of my favorite shows. I own The Tudors seasons I and II on DVD and have frequently watched an episode during which the cook who was found guilty of poisoning some of King Henry VIII’s advisors was boiled alive in an “eye for an eye” attempt at punishment. As with my trip to the ER bathroom, my foot and lower calf felt as if it were being slowly lowered into a boiling cauldron….no joke. The pain was that immense.

That's my leg inside the cauldron.

 

 

By lunch time, and because I missed the nasty food cart, my TNT friend Amanda offered to bring Quizno’s to my Morphine-happy ass. She arrived at 12:30 and left at 2:00, during which time my new doctor visited. Dr. Miller, on-call for Dr. Panther, confirmed that we were dealing with MRSA and used a ballpoint pen to mark the red lines along my heel and calf. This, by the way, is a perfectly acceptable and standard form of indicating the lines of demarcation to determine whether or not the infection was spreading (ie: responding to treatment or not). After she finished her artwork, I asked her if this was a simple case of 24-hour observation since I was, in fact, talking, breathing, and conscious and, pain aside, mobile.

            “Uhhhh….no, no….you are really sick. You’ll definitely be here until Saturday, if not through the weekend. I know you feel okay with pain management but this is still very serious.”

            Yeah, so I’m on strong drugs I feel much better so allow me to digest this little tidbit….

 

Typical case of MRSA

            After Dr. Miller took her leave, I left a message for Dr. Wilks to call me back seeing as I was IN THE HOSPITAL and NEEDED HER. While Amanda and I were eating and chatting, my phone rang. It was Cancer Care Centers of South Texas and I took the chance that it was my hero.

            I answered: “Dr. Wilks…………………………WHYYYYY?????”

            “I don’t KNOW!” responded that familiar voice. We talked for a few minutes and she told me that she would ask her good friend to check in on me. Since Dr. Wilks doesn’t have privileges there (Metropolitan Methodist is nowhere near the CCCST), Dr. Dham would be stopping by and providing regular updates. Even though I would miss seeing her, I was comforted that she was putting me in the care of someone she fully trusted. She told me to hang in there and continue fighting. “I love you,” she said.

            “I love you too.”

            After hanging up, Amanda’s eyebrows furrowed. “Was that…ummm….your doctor?”

            “Yes, yes it was,” I said defiantly, totally defensive of how much I cared for Dr. Wilks. Everyone can SUCK IT for being judgmental--the woman saved my life. A few hours later, long after Amanda left, another TNT friend named Tom arrived to keep me company. Because I was on 5 doses of Morphine, our conversation was cut short.

Only an hour later, Mom arrived from Rockport. Her glamorous “hairs did” and whatnot, in juxtaposition with my football-sized foot marked up with blue pen, made us quite the pair. Needless to say, she had no idea that, upon leaving my apartment the previous Tuesday with a sudden--albeit average--blister, she would be returning to me in the hospital on Thursday with MRSA. Oops. While still there, Dr. Edwards returned to my room. He and Mom finally met as I was draped in a lovely hospital gown, bejeweled with sexy tubes. Don’t hate me cuz you ain’t me. Moments after he left, the head nurse made an appearance. She and Mom exchanged stories about me as I lay there, confined to my bed and a victim of verbal abuse (“oh, and this one time you’ll never guess what she…..”).

Mama left that evening at 5:00 to take care of Lola. Moments later, my Triage Nurse from work, Regina, arrived and kept me company for about 30 minutes. I so appreciated her efforts and, between us, she is one of my very favorite staff members (out of 30). Thanks, Reggie, for making me laugh while held captive! Oh, and don’t let my watching King of the Hill taint your vision of me as SuperBoss. Ha.

Mom returned that evening to bring my toiletries after my FANTASTIC(-ally horrible) dinner of hospital roast beef, vegetables, cold roll, and iced tea. Though nasty as the food was, I will not complain. I will, however, require certain amenities. Even in the hospital I can only function on Cetaphil cleanser, Neutrogena moisturizer, toothbrush, toothpaste, floss, lip balm, deodorant, and hand cream for my cuticles. It may seem excessive but remember that said needs were reduced to a mere Glad freezer bag of items plus some underwear and previously-confiscated hospital scrubs (from Iowa) to sleep in.

That night, I met my 3^rd shift nurse, Jack. He introduced himself by throwing open the door, standing in the entryway, and instructing me that it was TIME TO PROVIDE A BLOOD SAMPLE! After nearly a year of encountering oncology nursing, I’ve NEVER met someone so blunt and rude. Oncology nurses are, in fact, notorious for being wonderfully selfless and loving. Taken aback, I simply nodded and attempted to joke with him. Alas….Jack does not joke. Instead, he remained at a distance in the doorway (to prevent transfer of any remaining cancer germs I presume) and asked how I was feeling. Wait, no he didn’t: He asked if I was “okay,” and if I had “peed” that night.

            “Actually,” I said, “I’m itching a lot. A LOT.  I’ve had a few doses of morphine and some antibiotics, but the itching is actually becoming uncontrollable. I can’t help it…..seee?????” (I revealed to him my newly-scratched, self-brutalized arms). Jack told me that the Morphine is the most likely culprit and called Dr. Miller, who prescribed 25 mg of relief via Benadryl, although I still continued to itch like crazy. In fact, I resembled a dog with fleas. (Seriously, days later, Mama Jackie would imitate/ridicule me).

And yet, despite Benadryl, I was still itching on my scalp, neck, chest, belly, calves, and feet—even my infected, painful-to-the-touch foot—just two hours after my previous cocktail of Morphine and Benadryl. At hour three, Jack scored me an additional 25 mg of Benadryl, but warned me that I had met my max. NO MAS would be called in. According to Jack: Stick a fork in me…I was done.

At midnight, I dared to summon Murse (read: Male Nurse) Jack by way of call button. I was still itching and, by this time, in distress. In fact, I had managed to climb out of bed and limp into the bathroom (seriously against orders) to inspect my face. I had scratched it terribly and, upon returning to bed, found blood on my pillow, gown, and sheets. I had scratched myself to the point of bleeding: I had scratched myself silly. Upon entering the room, Jack acknowledged my obvious allergy and determined that this was “just part of it. You are clearly allergic to something,” he said. “I mean, I can call your doctor if you want, but she has only approved 50 mg of Benadryl. It really won’t matter.  Sorry.”

Rethinking what he just said, I responded without hesitation. “Yes, I want. I am bleeding all over the bed. It may mean nothing to you but please—AT LEAST—record it in my chart.” I pleaded. “I am miserable. I can’t stop myself from scratching my body, my face, and my scalp!” I said, pointing to the scratch marks on my cheeks for emphasis. Jack said that I was just “adding to the doctor’s schedule” and that my distress was, again, “just part of it.” He reminded me that I was not in a hotel; I was in a hospital. I explained to him that I didn’t expect miracles (or a mint on my pillow) but that I did expect him to address my medical issues…..I’m a mess and, as my nurse, he’s accountable.

 

It's REAL--the biology of morphine and its Pruritis side effect

 

            Two hours of itching misery later, I called the Nurse button again. Jack emerged, visibly pissed. “What do you need?” he asked (and, might I add, quite irritated).

            “I am seriously in pain. The itching is unavoidable and I don’t know what else to do. I do have an MHA and I do work in healthcare with nurses and I do understand how hard you work but I really can’t deal with it anymore!!!” I felt so vulnerable and so helpless.

            “Well,” he said, I can’t change anything about that.” I stared him down with my poison-dart-shooting eyes (and severely infected foot with toes pointing directly at him in an attempt to exterminate him with my nastiness) until he left. Shortly thereafter, I welcomed my new nurse Nicola.

“I hear you were having troubles with side effects,” said a cheerful British accent, “and I’ve already called Dr. Miller. After all,” she said, “It’s part of my job.” I later learned that she was the charge nurse. I proclaim now that I HEART NICOLA!!! I explained my issues, showed her my bloodied linens, and she secured an additional 25 mg dose of Benadryl for my itching, managing the impossible: 75 mg of Benadryl and regular Antibiotics = decent night sleep. She also switched my medication from Morphine to Dilaudid, after Dr. Miller assumed that the offending allergic reaction was to Morphine. That night, Nicola pushed Dilaudid into my central line for the first time. The effect was JUST as amazing as morphine; In fact, I made a conscious attempt to NOT react as the drug entered my system every four hours knowing that, if I seemed too satisfied, I could be accused of drug-seeking. I acted nonchalant…this was nothing….just some basic pain relief (aside from the incomprehensible sensation coursing through my circulatory system, reverberating in my muscles, and settling into bliss). Because Morphine and Dilaudid are friggin’ awesome, I will describe the effects: Imagine your whole body relaxing, going numb, and eventually tingling. This initial response only lasts a short time but the “floaty” effect lasts for at least an hour. After that, I am left with a space cadet sensation of pain relief and relaxation. Later, I found out that Dilaudid is the lesser-used drug because it is highly addictive. Can’t imagine… Needless to say, Nicola is now SuperNurse, with or without the UNBELIEVABLE drugs.

In the wee hours of the morning, as two other nurses were discussing how to treat my pain even though it was clearly between dosages, one suggested that they try Tylenol. The other asked if they still had some on the floor and the other responded, “I think so. We can get some down the hall though.”

            This is when my drug-induced dementia got the best of me.

            “We really do. I just had Regina bring some from the pharmacy last week. Go check at the triage desk.”

            Both nurses stopped what they were doing and stared blankly at me. “What?” It was at this point that I realized I was between two worlds. Normally, I’d have been horribly embarrassed but I was too stoned to care.

            “Oh nevermind.” I said. “Just do what you want. I don’t care.” That ended that. (Must stop thinking about work…)

On Friday morning, August 26^th, I met Dr. Dham, the friend of General Wilksie whose CCCST clinic is in the Metropolitan Pavilion and who therefore has privileges with the Methodist Health System. What she said affected me tremendously. She told me that, unfortunately, this may be the way my life would proceed—like, forever. In fact, I may be at the mercy of Hodgkins Disease, which, even when treated, has a history of “chipping away” at one’s health. In other words: Don’t give up hope but don’t be surprised or dismayed if I get sick again, and again, and again, and again……. 

“I hope you’re not a frequent flyer,” she said earnestly.

After she left (and I actually found her to be lovely, funny, and sweet despite the unsavory projection), I took a few moments to reflect: This really could be my life. This really could be what I’m up against every flu season, every highly contagious case of strep throat, every minor virus, every routine cold, and every MRSA. This could be my life whether or not my cancer decides to try me again….this could be my eternal prognosis. Instead of being angry or saddened, I was surprisingly matter-of-fact and decided that no step was too minor to prevent the seemingly inevitable. I decided that I will eat according to the food pyramid, I will resume exercising (since stopping when I became too weak to continue), I will take doctor-recommended vitamins and supplements, I will wash my hands religiously, and I will use hand sanitizer. My pledge, from this point forward, is that if I do happen to get sick it will not be from lack of trying to stay healthy. Take note: If I get sick, it is not my fault.

Mid-morning, I received a bouquet from my Team in Training group. THANK YOU!!!

At lunch, Drs. Lee and Dons visited me from my clinic. My Mom and I were both overcome with emotion after they left as we acknowledged that they cared enough to visit me while I was still confined to the hospital. They are both so sweet and I felt validated in my career.

Later that day, Dr. Miller emerged once again. Because Dr. Gonzalez had taken a fluid sample, Dr. Miller called her while in my room to obtain the results. During the conversation, Dr. Miller threw me a ‘thumbs-up sign.’ Upon hanging up, she told me that the tests revealed NEGATIVE for MRSA and POSITIVE for STAPH. We all exhaled with relief and cheered that I was not, in fact, harboring a gross--sometimes deadly--flesh-eating bacterial infection. She decided that we would continue treating with various antibiotics until the infection responded. “I have to warn you, though,” she said. “This type of infection usually gets worse before it gets better. That’s why I think you’ll be here through the weekend. Once you get over the hump, we can talk about letting you go home.”

That evening, I slept on and off as nurses, aides, and other healthcare workers continuously woke me for vitals and bloodwork. On Saturday, September 27^th, Drs. Miller and Dham came to my room at almost the same time. Both observed that my foot was getting NO BETTER and even indicated that my infection was progressing past the line of demarcation along the left-side right ankle. Swelling was increasing, redness was intensifying, and the pain was just as bad, if not worse. Dr. Miller said that this was NOT indicative of the get-worse-before-it-gets-better plan (indeed, it was worse than that) and arranged for an Infectious Disease specialist to treat me. Within minutes, she reported that Dr. Kim Moran would be visiting me soon. And yet, they suddenly realized that I had been treated by her on-call partner, Dr. Wood, who saved my life from succumbing to pneumonia only months before, and asked if I would be more comfortable seeing him. Since they all have my best interest at heart, I determined that Dr. Moran must be just as amazing. Mom commented that ALL of my doctors are females and proclaimed: “GIRL POWER!” Yesssss for Drs. Gonzalez, Wilks, Miller, and Moran!”  Later that evening, Dr. Moran assessed my ankle and determined that, despite the fact that a rudimentary test determined I had a Staph infection, my illness was not responding in kind. In fact, she said, it was, indeed, acting like MRSA. Combined with Dr. Larson’s assessment that it looked, felt, and acted like MRSA, Dr. Moran declared the test to be incorrect and confirmed that I did, in fact, have MRSA, a deadly disease. She put me on a hardcore antibiotic known for its compatibility with treating the infection and told me to hope for the best since the other six antibiotics were clearly not working.

By Sunday morning, September 28^th, I was slightly better. The lesser-used (for its intensity and possible long-term side effects including hearing loss and renal problems) all-powerful Vancomycin proved to be helping and Dr. Miller realized that this positive reaction was proof of MRSA. She agreed to keep me on Vanco, Levaquin, Dilaudid, and Benadryl. Under the circumstances, Sunday was uneventful, albeit a tad more productive disease-wise, and Dr. Moran decided to test the waters. She would kill the Vancomycin IV altogether to test the Levaquin alone. In fact, if I could tolerate oral Levaquin and my foot still improved, she would feel assured that she was on the right track. The remainder of Sunday and all of Monday proved to be successful while solely on oral meds (Levaquin and Darvocet every four hours—at a VERY weak dosage I might add) and Dr. Moran recommended my discharge on Tuesday.

And, might I add, it had been nearly a week since I shaved. With multiple doctors coming in several times a day examining a sick fuzzy leg and comparing it to a healthy fuzzy leg, I was beyond self conscious. I begged for a razor but was ignored. I PLEADED for a razor but was shot down. Eventually, I just ever so sweetly demanded one but Dr. Moran agreed to only let me shave while a nurse was nearby and only if I promised to proceed with extreme caution. Every doctor I know has expressed how little they pay attention to body hair but I don't buy it. Like, at all. What I find most precious is the juxtoposition of massive growth of hair on my legs in sharp contrast to the patchy chick-fuzz on my head. And the razor they gave me? Yeah, it was the standard hospital issue cheap plastic medieval torture device. I later suspected that was the reason for the bedside anti-shaving campaign seeing as anyone could find themselves mistaken for a victim of a knife fight after using one. A person who landed in the hospital precisely for a catastrophic shaving nick, on the other hand, would behoove herself to wait until she gets home and can use her Gilette Venus with soothing aloe strips. It was worth it, though.

On Tuesday, most of the doctors and nurses were prepared for my release as I hobbled around my room gathering my take-home bag of toiletries and confiscated hospital items (plastic pitcher, emesis basin, etc. because you just never know and each costs like $100.00 in hospital pricing and I’ll be paying for the damn things). I waited all morning for Dr. Panther, my admitting physician (and therefore my discharge doc), to give the A-OK. My vitals were taken twice. My nasty lunch was delivered and my nasty lunch was eaten. Work calls were made. FINALLY, at 2:00 PM, Dr. Panther ordered my discharge and I was graced with five pages of paperwork. I was home by 2:30 and asleep in my bed by 3:00 while Mom retrieved my Levaquin Rx from Wal-Mart. I was elated to stretch out in my queen-sized feather bed, watching good trash TV and reading my book (irresistible wiener doggie at my side the entire time).  

And yet, still afflicted with hospital-grade narcotic-induced fatigue, I slept most of Wednesday and emerged that evening to open a bottle of wine at 4:30. Mom made BBQ pork and we enjoyed a homemade dinner after we had both mustered mass-produced hospital nastiness for nearly a week. On Thursday Mom followed me to work so that I could pick up my car that was still parked under the building in the physician lot (just a work perk of working for prominent docs). We went to my office so that Dr. Edwards could examine my newly shrunken (yet still curiously red) foot. While there, I checked e-mail and hugged my staff as they came in to check on me. I felt loved and blessed to have such an AMAZING team to work with. Dr. Edwards agreed that I had “turned the corner.” Mom was supposed to follow me back home but was surprisingly late. I later learned that she had found the office building pharmacy. While it does, in fact, sell OTC and Rx drugs, White Cross Pharmacy also sells the most FABULOUS local jewelry and accessories. An hour later, Mama came home and gushed about the bejeweled necklaces, woven shirts, and funky handbags. This is just one of the many things I love about Texas….where one can find intricate artisan works in Mom & Pop shops. And yet, the most effective and meaningful comment she made was that my staff really loves me. “They adore you,” she said. Awwww…..I really try to be a great boss (fun but firm, steadfast but understanding) but it’s nice that someone else recognizes it.

That night, Mom and I headed to India Palace for our beloved Indian food. Aside from visiting the office, it was the first time I had been allowed out in public since being banished to the hospital for a deadly, highly contagious infection. People are so touchy. Of course, we enjoyed our spicy and saucy foods and browsed the store next door for bags, jewelry, and shoes. While she gushed over the finds, I felt miserable in my inability to purchase anything for ME. My income first covers living expenses and then pays off portions of both my numerous medical bills and grad school. Whatever leftover funds I am delighted to find in my bank account are stocked away for savings. LITERALLY, folks, you never know when you’ll need it. Take it from me, Ms. Paranoia speaking from solid experience. Like cancer.



This is why she sleeps with me:
She requires 2 pillows and
multiple blankets

Mom left the next day, Friday, September 4^th. I spent the weekend doing little more than visiting the toilet, grocery store, and fridge in favor of storing up sleep in preparation for a full week of work ahead. On Sunday night, I awoke to Lola’s unaccustomed movements and shaking. Lola was having a serious elderly accident—like, the liquid kind. Instead of chastising her for something she could clearly not control (bladder and bowel incontinence), I set her in her dog bed as I stripped my bedding (yes, she sleeps with me—she would have it no other way) and simultaneously thanked God that the next day was a blessed Labor Day holiday. This visual obviated why I was still single….my dog rules my house and, as an old lady, has some THANGS to SAY….  Seriously, though, while the washer and dryer worked hard at de-nastifying the Egyptian cotton, Lola and I took two walks and moved to the guestroom (formerly known as “Jackie’s Boudoir”), a clean, furnished, perfectly respectable alternative. The problem was twofold: I was not in my own bed (even though I owned the bed and was quite comfortable) and my child was ill. These two things kept me awake. I spent Monday morning sleeping and completing chores, wondering where the last of my time-off went and cursing the start of the week, as necessary as it is…

Without further incident, I chalked Lola’s illness up to a toxic ingestion of leaves, twigs, or other substances while frolicking outside. Case closed. The rest of the day Lola was weak but otherwise displayed a healthy appetite and zest for playing. Still feeling depressed, I called Mom on Monday morning while drinking coffee and attempting to watch daytime TV. I told her something that had been on my mind for weeks, if not months. I asked her to vow never to laugh at or judge me for saying what I was about to say. I told her what had been consuming me: Based on the fact that I am seriously immunosuppressed, I was not going to live long. That, in fact, I took what Dr. Dham had told me to heart. Not BECAUSE of what she said, but because it was ringing true and contributing to a feeling I’d been storing in my heart. A few weeks prior, I wondered why I was still the way I was. On the outside, I was a decent looking single woman with a Master’s degree and a pretty agreeable personality. And yet, I (and others) questioned why I was still alone. I mean, I didn’t exactly MIND being single, but why was I not desired? Why was I not already with someone who loyally stood by me through my hard times OR who was interested in investing a life with a “real survivor?” I’ll give ‘em the hair thing: I mean, I am sporting a mad whitegirl afro. My fro now reaches 2 inches up and out, but has yet to fall downward in an attempt at an actual hairstyle. Please wish it luck as it continues to channel Blanche Devereaux from the Golden Girls. I digress. I really did think I’d figured it all out: I was single and ready to mingle precisely because I wasn’t expected to have a long lifespan. I was connecting with an inner emotion that I realized had been lurking there all along. It seemed clear to me now: I was not long for this world.

I returned to work on Tuesday with a few dozen “Welcome Backs” from my staff and the docs. I am truly blessed to have such amazing employees and couldn’t wait to get back into the full whoa-it’s-already-lunchtime and juggling-five-separate-but-unrelated-issues swing o’ thangs. Despite the massive stack on my desk, however, I was still charged with issuing payroll. This is no easy task as I must first calculate each employee’s hours, then determine time-off statuses, and finally calculate everything into our payroll system. I usually shut my door for this daunting task (I would hate to screw with anyone’s paycheck—including my own) but felt compelled to keep my door open this week as opposed to alienating the staff under the recent circumstances. I happily accomplished payroll on Tuesday before deadline, but was still faced with other looming deadlines. A folder filled with bills-to-be-paid still mocked me with a menacing face and I tackled said items on Wednesday by filling the printer tray with Quickbooks printable checks, inquiring with both banks about the account statuses, and carefully calculating what we could afford to pay. Even the most lucrative businesses have a cash flow pattern that must be monitored carefully throughout the month. In fact, I started from the bottom (due soon) upwards (due later) as it would represent the time-lapse factor in a more accurate manner. As I pulled out Dr. Edwards’s American Express bill, I double-checked his review. Each month, he carefully determines which expenses are to be allocated to his personal needs, his winery (a very reputable and exclusive establishment located just north of San Antonio but known throughout the country), or his medical practice. In turn, I pay his business expenses with a company check and the remaining balance with a personal Edwards check. In reviewing this, I found that he had overlooked a business expense thus causing me to nearly allocate said (high dollar—like, in the thousands—you figure the interest and do the math) amount to he and his wife. To make sure, I called his cell phone. When I told him that I was concerned that he almost paid for a medical conference out-of-pocket, the usual jovial and laid-back Dr. Edwards had a startling, out-of-character response.

Having a meltdown

            “I told you to pay that a long time ago!”

            “I’m sorry…..I’m just now getting back to work and able to pay the bills.”

            “That’s no excuse. Now I’m going to pay a very large late fee because you neglected to pay.”

            “I will call them and explain the situation. It is totally my fault.”

            “You need to pay it!” Click.

I sat there, stunned and rendered completely immobile. Motivated (by humiliation) into action, I printed the check and continued my bill-paying process, all the while growing incensed that I was blamed for a problem that was NOT created by me. In fact, every time I’ve been rightly accused of wrongdoing while on the job I have sucked it up and admitted it, stating that I had “dropped the ball.” This was not one of those situations.  He gave me that statement on Monday, August 24^th. Because I was told to ONLY pay bills twice a month (after payroll so that my awesome staff was cleared first), I KNEW I would include it with the pile of bills remaining to be paid after payroll was processed. All bills, still current, would be paid that morning and received midweek around the 1^st of September. And yet, just a day before my self-appointed bill-pay, I was admitted to the hospital. While confined to the prison sentence of 3^rd floor Oncology, I accepted calls from the Charge Nurse, Billing Supervisor, and various doctors. I even accepted a call from the bank inquiring about an account issue. In other words: I continued to monitor daily activities and handle situations as they arose. I heard nothing from American Express or that particular physician and, upon being discharged on August 29^th, felt relatively certain that things were A-OK in the clinic. And yet, now I was deemed culpable for a potentially devastating mistake. The doctor could be charge a 20% (very sizeable) late fee for my inability to pay on time. As I pondered this, I thought….wait…I was back to work within 10 days—even fewer when you consider regular call-ins from my hospital room. If it was late, that was only due to the fact that the doc withheld it, sitting on his kitchen counter for weeks, before handing it off to me, rendering it a last-minute bill. This was NOT my doing.

            The next morning, I entered his office with the intent of explaining myself-- particularly after a sleepless night of rehearsing my talking points ad nauseum. Before I could open my mouth, Dr. E launched into me. “You failed to do as I asked. I told you to pay that RIGHT AWAY and you didn’t. That’s gonna cost me.”

            Calmly and with practiced composure, I said, “Please let me explain. This is not an excuse but an explanation. You wanted me to pay the bills AFTER payroll, which was made expressly clear to me. Payroll was on Friday and I was admitted to the hospital on the previous Thursday. By the time I got out, bills were ready to be paid but by no means overdue. I had no idea that your AmEx bill was critical. I am so, so sorry. If you want me to make it the exception to your rule, I will.”

            “It ALWAYS needs to be paid immediately. I told you that.”

With sweaty palms, I chose to not say, “FALSE: You told me to pay it soon and ‘soon’ to me referred to 3 days later with the other bills, as you had requested. And Oops!!!….I was put in the hospital.” Instead, I admitted defeat and apologized yet again, taking full responsibility and assuring him that it would not happen again. He dismissed me, coolly.

I was enraged. I called Mom. She talked me down. I settled down and took a xanax. It was over.

The rest of the week I regained self-confidence as tasks were accomplished and staff expressed their wishes and entrusted me with new issues to attack. I was BACK, BABY! The following two weeks were seamless and I continued about my job as if nothing happened. In fact, a second late notice appeared for the infamous AmEx bill and I took it upon myself to call and inquire about any late fees as the paid check was well on its way. None were incurred (he is a loyal customer) and I reported this to him, as well as the fact that his newly-arrived-on-my-desk albeit late cell phone bill had incurred a $6.00 late fee but I successfully (and very easily) had it removed. He was pleased, but did not hesitate to remind me that this was MY FAULT. I walked away kinda pissed off.

So here I am, decompressed. I’m back to work and trying to make sense of my body’s complexities. Thank you for all of your kind wishes. My infection is cured and I am still awaiting some sort of response to the hormones and B-12. Some days are better than others but every day is a learning experience. I do love my job and my staff but—I can’t lie—I still long to be independently wealthy so that I can work part-time (to, you know, stay mentally sharp) and spend the rest of the time pursuing my dreams, whatever they may be. Until then, I will count my blessing and be glad.