World In Motion: Parts 1, 2, 3--Navigating Health Storms and Healthcare System

WORLD IN MOTION: PART I

A health storm descended on my family's lives...

By Lu Sobredo

The southeasterly wind howled. What has angered it so? The rain wasn’t happy either. The deluge pounded against the wall near where I slept. There was swaying for sure. Or was I having one of those episodes that compelled my husband to drive me to a nearby hospital? We both agreed my symptoms were alarming enough that warranted a run to the emergency room.  

I slowly opened my eyes to get my bearings. Still too dark to be morning. The light from the digital clock reminded me we spent the night in our sailboat. It was 3 a.m., Sunday January 6, 2019. Epiphany Sunday, the feast day for christians to commemorate when God the incarnate revealed as Jesus Christ to the Magi—The Three Kings. Somehow, I felt the Universe was speaking to me in kind words despite the tempestuous weather.

Our boat was safely moored. However, the wrath of the storm hitting Northern California made itself felt. The wild rocking of the sailboat was not normal except during El Nino’s weather in winter. The El Nino weather pattern is said to occur every two to seven years causing a rise in temperatures. The impact is dramatic to weather patterns in most of  our planet Earth. I don’t think this storm was because of El Nino. Strangely, I was comforted that the motion I sensed was real. Disturbed, however, by the reminder that only two weeks prior, a case of vertigo hit me with a vengeance. It was a daunting experience since I rarely get headaches, not even simple-short-term headaches. That was the episode that found me in the hospital where I underwent a thorough look-over with all sorts of laboratory tests that thankfully read normal. Except for the CT scan. The emergency unit was run efficiently like a well-oiled machine. I was seen within a few minutes by professional staff after arriving; walked through from room to room for blood work, urine sample, EKG, X-Ray, CT scan; consulted with medical staff; and readied for release with instructions. All within three hours. Unheard of in most emergency rooms we have visited in the past. That was the pleasant surprise. The medical staff thought they found the potential cause of why my world appears to be spinning in endless motion. This was the unpleasant surprise. The anti-dizzy pill I was given took longer than expected to take effect. Keeping my eyes closed gave a false sense that all was well. If truth be told, I felt like I was falling into the abyss. My assigned nurse  kept me in the emergency room lobby until my internal storm calmed.

Too stunned to process the news, I sat motionless. The dizziness in my head eventually subsided while in the emergency room. Although the feeling of a heavy cloud still enveloped my head. My darling husband asked the essential questions. I remained speechless. My hubby later confessed that upon hearing the medical staff’s pronouncement, he felt numbed. 

The Comforting Touch of a Spouse. ©James Sobredo

I was released from the hospital with instructions to see my primary care (PC) physician as soon as possible. It was crucial that my doctor order an enhanced MRI. The main goal was to seek referral to a specialist within a few weeks. By the following day, I saw my PC. The day after, I underwent a more enhanced MRI scan that took about one hour and half. Never mind that I don't do well in tight spaces. The MRI scan was brutal to my equilibrium. The piercing, jarring sound from the machine seems to stay in my ears weeks later. 

We are still numb. We are anxious to hear regarding my doctor’s referral to the University of California Davis Medical Center. My case is pending review, I was told a few days after Christmas. The waiting is agonizing as the symptoms come and go as they please. Ever so grateful that my husband is by my side to reassure me I am not facing the next ordeal alone. As if being diagnosed five years ago with a crippling systemic autoimmune disease, severe Rheumatoid Arthritis (RA), wasn’t a sufficient health challenge. But we faced that challenge and all that it entails head-on. The Universe conspired then to help me reach functionality, the best-case-scenario one can hope for a disease without a known cure. So for this life challenge, I stay resolute that I can transcend the newest medical storm. 

Our Marina After A Weekend Storm

WAITING OUT THE STORM

By morning the angry wind was reduced to discordant whistles. The sailboat swayed from side to side. Thank goodness the wild rocking was gone. The Bay waters lapping against the docks awkwardly kept pace with the jingling and clanging in the marina. I suspected the sounds came from the halyards, stanchions, forestay and backstay resisting the wind. I had heard my husband speak of these nautical terms. They simply refer to different ropes, steel wires, and lines strategically secured around the sailboat. Halyards, a fancy word for rope that brings up the sails. Stanchions are the steel poles with wires threaded through them that’s like a fence around the sailboat designed to prevent (not guarantee) one from falling off of it. And forestay, the steel lines at the bow (front), and the backstay, the stern (back) of the boat that keep the mast upright. I waited until the rain rested before going outside the comfort of a warm cabin. It was time to see the world outside after the storm. My dear husband helped me safely off the boat. Standing on the pier with my walking cane, I took a long deep breath of the cold air. I don’t like the cold much. Yet, the feeling of being alive took precedence. With outstretched arms, I offered the universe a big hug.

The alarming feeling was less intense, although the growing calm did not take away the pulsating pressure around my head. Two weeks since the visit to the emergency room, the anti-dizzy pills prescribed by the emergency medical staff stay in my purse at all times.  They have served me well in the ensuing weeks. Instructed by the emergency staff to minimize sudden movements to lessen the likelihood of another spell of vertigo, I’ve had to forego trips to the gym for my aqua aerobics. Aqua aerobics is one activity in a multi-level exercise strategy that keeps my RA under control. See a recent essay: Life With RA: Exercise Strategy That Works.

Staying away from the gym seemed the responsible thing to do. The symptoms around my head visit me every other day. Or so it seems. The pressure around the crown area has been hard to ignore. Why? The nagging discomfort, that radiates from the top of the head to the right side of the face down my neck and shoulder, has slowly shaken my core. This must be what a migraine headache feels like. Maybe it’s not a migraine at all. At this point, I don’t know for sure. 

I made a couple of follow-up calls to the referring physician’s office. Staff assured me that my case is pending review by UC Davis Medical Center’s Neurology Department. Sensing my uneasiness three weeks after they had sent the referral, staff gave me a direct phone number to the Neurology Department. It’s immaterial that I am one of the lucky ones with a robust health insurance coverage in California. I have faced my own share of frustrations when navigating our healthcare system in the U.S. And I have a doctor who cares. Imagine if the doctor was indifferent. 

Bureaucracy is not alien to me. I had a 30-plus-year career in the California State Disability Insurance industry. That familiarity did not shield me from encountering unnecessary hoops when transacting for my healthcare needs. I wonder how others manage their own interaction. So many steps. So many  forces controlling each step of the healthcare system. 

By the third week since the medical referral, I called the Neurology Department. The staff there confirmed that my case is pending review. Since they are not an urgent care unit, the referral process could take 2-4 weeks. And so I wait, optimistic that the fourth week is approaching. My headache and other symptoms are part of my current reality. Therefore, for now I have temporarily accepted the symptoms which are hell bent to disrupt my daily routine.

What’s disturbing during this waiting phase is twofold: the inability to engage in physical exercise like my walks and aqua aerobics; and the resulting stress of not knowing the diagnosis and its severity. Stress is said to push my susceptibility to infection. Already suffering from RA, a chronic illness that compromises my immune system, the last thing I needed was an unknown condition. Unfortunately this period of unease got complicated. I contracted an abscess on my buttock that required me to take antibiotics. I was warned, people with RA are susceptible to infection.

So the concern became threefold. Never mind the pain when sitting up. The need to take antibiotics meant I had to forego major RA medications. Two injections once a week are meant to help reduce inflammation, lower the pain, and slow down damage to my joints affected by RA. But the medications also suppress my immune system. Healing the infection quickly is crucial as infections in RA patients could spread like wildfire throughout my already weakened body. That would be sucky. I was to observe if the antibiotics are taking effect to clear the abscess. Otherwise, a surgeon would have to cut and drain it. Luckily, I didn’t have to see a surgeon for now. But so goes the delicate routine of someone with an invisible systemic autoimmune disease. Granted, I still consider myself blessed. I am alive, adjusting to a different standard of a quality life, and surrounded with love from my husband, family and close friends. 

I think often about my compatriots who are RA sufferers or those with an autoimmune illness or are caregivers to one. You are my heroes and heroines. There’s a whole community of us. I am comforted by stories of resilience, compassion and advocacy. Find out more from Eileen Davidson of Chronic Eileen and Jodi Ettenberg of Legal Nomads.

Maintaining a social network is highly recommended for folks with a chronic illness. I am missing friends in my Aqua Aerobics class which I usually join three times a week. Definitely missing the movements in the water for flexibility-building and muscle strengthening. Remorseful at the prospect of losing the muscle mass I regained in the last three years. The inactivity and reduced mobility when at the height of my RA had weakened my muscles and joints. And the path to increased muscle mass and enhanced mobility has been a source of pride. Off the wheelchair onto the use of a walking cane has given me a sense of freedom and independence beyond words. I dread the idea of losing a hard-fought/hard-earned sense of freedom. 

Storm Brewing in Northern California. ©Lu Sobredo

The tempestuous storm has passed through the San Francisco Bay Area. However, each week brings a forecast of more winter storms. Wading through the storm has been a necessity. Wading through the phase of not knowing why my world spins when dizzy? That has been an art form necessitating a lot of creative distraction, patience, and prayer. 

The infection on my buttock did heal with antibiotics. Mentally, I had prepared to stay patient as I waited to hear from the Neurology Department. However, as crazy forces would have it, I ended up getting a toothache within days of ending the use of antibiotics. A toothache is a misnomer, more appropriately the entire right side of my mouth seems to be rebelling.  Maybe one tooth is the culprit and all the other teeth around it are going through sympathy pains. Why not? The dentist’s office is closed during the long holiday weekend for Martin Luther King Day. Home remedies including Tylenol capsules have helped mask the pain. And so I wait to see the dentist. I wait to hear about my neurology referral. And I wait, not disparaged by the circumstances dancing around my health.

A HOLDING PATTERN

Imagine being in an airplane on a holding pattern waiting for clearance to land. One hopes that the aircraft had fuel for these circumstances. That happened to our flight from Spain to San Francisco International Airport a few years back. The pilot had to fly the airplane in an oval pattern over the landing area which just happens to be by the San Francisco Bay. My unfamiliarity to what was happening, and the off chance we might land in the water, caused such unease. Unable to totally bate my anxiety, I must have said the rosary in my mind multiple times. After an hour of this, we safely landed.

That experience did not prepare me at all for the the kind of holding pattern of waiting to hear from the Neurology Department. The wait was usually to take around one month, which is much too long for anyone hosting a foreign growth in her brain. Seven weeks to the day of my medical referral, I received a phone message to call back for a consultation-appointment with a neurosurgeon. 

Disappointed that it was too late in the day to return the call, I stayed antsy all night. Strong emotions welled up from  deep in my gut as I realized I would soon see a specialist. It was a night of sobbing. Anticipation for morning made for a disturbed sleep. 

Morning came. There was much incentive to wake up early and make the call before the the phone lines at the Medical Center got too busy. I told myself to take a cleansing breath. I made the call to the Neurosurgery Center. 

Emotions were mixed as I called for the appointment. Relieved that my case was reviewed and I would finally see a specialist. Dispirited that the person on the other end of the phone seemed detached and clueless. I could handle “cluelessness.” Lethargy in her voice gave the impression of indifference. And she had such a pretty name, but absent of affect. We got through the process and I have a date to consult with a neurosurgeon. The earliest appointment I could get was in two and a half weeks. 

I am not angry. I am not even angry at having to wait, or be subjected to indifference. I bemoan that a staff at the neurosurgery center, a place designated to deal with folks facing a life threatening condition, is lacking human touch.

Did I call too early? Maybe 8:30 in the morning on a Tuesday, office folks are not invigorated  yet. Their compassionate gene not yet awake, maybe? After making the appointment, I immediately called my PC physician’s office to let them know. Gloria, the wonderful staff whom I have known for years, has called the Neurology Center almost weekly for an update on my behalf. Unfortunately, she was busy with a patient this day, so I left a message with the receptionist who proceeded to argue with me. I requested the CD of the MRI images taken. She said, “No,” they don’t get those as they don’t have the equipment for reading the CD. 

I said, “That’s alright, just have Gloria request it and I’ll pick it up.”

“Oh, no.” She insisted that only the consulting physician can request it from the imaging center. She and I kept our tones polite at least. I was near tears.

I told her to please not argue. I happen to know from experience that their clinic can request the CD. I need to take the CD with me for my appointment. She agreed to talk to Gloria. 

Taking deep breaths when I encounter a snag in what should be simple transaction? Thankfully helpful. I surmise that after seven weeks of feeling as if I was on an airplane hovering over a landing field might have turned me listless and intolerant. During this entire time of waiting, I felt such array of pains. Pain from my RA flares. Of course, there was the toothache that won’t quit. It was as infuriating as it sounds. The ugly rebellion in my mouth persisted for almost a week. Some respite from the throbbing pain in my mouth came only after taking extra strength Tylenol every six hours for several days. The pain never really went away. While on Tylenol, the dull pain was ever present. The source of the toothache was unclear. The sharp pain was most pronounced in my right lower molar. A numbing spray I brought home from Spain restrained me from totally losing it. In the end, my dentist sent me to an endodontist for an emergency root canal—a two-step process that spanned over three weeks. And another week’s worth of antibiotics meant I live with the RA flares a little longer. 

It was a winter ago that I had pain in the same area in my mouth when hubby and I were visiting the Basque Country in Spain. What happened in 2018? Too lazy on a rainy day to go out of our hotel for fresh bread, I chomped on a day old French bread. This winter in California, I was eating a day old French bread as well, to complement a favorite snack: manchego cheese. And within a couple of hours, a toothache. Warning: Avoid day-old French bread.

After the CT Scan. ©James Sobredo

Looking back at the recent weeks when home, I was pretty much walking around in a daze even though my toothache subsided. My son, now a young adult had just returned home from his volunteer work out of the country. My husband’s thought was, our son could help take care of me especially if I’ve had to undergo treatment or neurosurgery.

“How are you doing, Mom?” 

My son asked for the third time in a span of 20 minutes as he followed me around from the kitchen through the hallway to my bedroom. As if his doing so would yield a different answer. But the truth invariably would cause discomfort for both of us. 

“I have a nagging discomfort on the right side of the head. You know, the side where the mass was found via a CT scan weeks ago.” 

That was all I could say. We hugged. He genuinely cared. It was all the reassurance I needed in that moment in time.

Since I was still waiting to consult with a medical specialist to find out  what is going on, I could only guess that the unwelcome growth in the frontal part of my brain is pushing against some nerve that’s inevitably shooting numbness to my right temple, right eye, and aiming for my right cheek. The symptoms remain hard to ignore no matter the distraction.

***

(Stay tuned for details of the pot-hole in my life journey. I am doing my darnedest not to freak out until I hear from the medical expert. Praying for the best. And praying that the Universe will be compassionate to all of us in this New Year. I expect in Part 2 to have seen a neurologist and found out once and for all the diagnosis, severity and treatment for the mass in my front lobe). 

©Essay by Lu Sobredo

ALL RIGHTS RESERVED

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WORLD IN MOTION: PART II

While in the midst of a health storm...

I live with a crippling chronic autoimmune illness known as Rheumatoid Arthritis or RA. When I was hit by another personal health storm in December 2018, writing about the experience was my refuge. All the while, my family faced the journey in the ensuing months in 2019, winter storms have also descended on California. To get the backstory, find out here: World in Motion: Part 1.

The week of February 10, 2019 ushered in another winter storm that unleashed itself on Northern California. Not a desirable backdrop when unease already simmers within me. Weighing heavily was the uncertainty of a medical condition. Periodic lightheadedness and dizziness have become norm for about two months now. Fortunately, vertigo has not visited since the last attack alerted by body in December. I kept anti-dizzy pill close at hand just in case. Conquering that apprehension has taken precedence. But the turbulent rainstorms were hard to dismiss. The atmospheric river was to descend with force onto Southern California later; and it did. But not before wreaking havoc on our side of the State. The heavy rainfall caused flash floods in some places. Fallen trees devastated neighborhoods and were hazards on the road. The snow at 10 inches or so in the sierras did not make travel safe. Winter storms are a painful disruption to routine; yet more so when faced with health storms of your own. 

A large enough window of calm from the Thursday morning storm made for a pleasant ride to the endodontist office for step two of my root canal. The numbing injection into my gums also numbed the heavy sensation in my head. I could only suspect the source to be from the mass in the frontal lobe, the thought of which made me wince. About to feel sorry for myself, I was stopped on my tracks by the many voices of family and friends. Their message: physical pain is a signal that you’re alive. I know. The alternative is far from inviting. 

THAT FATED DAY IN MARCH

A woman about my height was dressed in a long, peasant dress. The dress draped protectively on her. The base color of her dress was black with vibrant red and rust orange floral design. The blossoming flowers were printed all around her skirt. The woman had dark, shoulder-length hair. At least 40 or older. She walked up to me, much too close to my face, boldly violating my private space. I reacted with force and hurled the words: Go away. I struggled to utter the words at least three times but to no avail. She still stood there. I thought perhaps I should say the words in Spanish to have any effect at all. But I didn’t have the words. 

By this time, I heard my husband’s voice gently saying, “I am here with you.” That’s when I realized I was lying next to my husband while I slept, and he, still awake with his iPad. He heard me mumbling, "Go away." I was having a nightmare. My hubby always says, dreams are your brain cells bumping, crashing into each other in the night. On the other hand he also believes that what we can see is not the only reality. That there are likely alternative realities in other realms. I dozed off again. The conflict in my dream faded without resolution.

When morning came, I woke up with a nagging desire to process the nightmare while the details were still retrievable in my mind. Maybe the nightmare was my response to the reality I heard from the neurosurgeon yesterday. The woman in my nightmare was a metaphor to the mass that has invaded my brain and I was desperately ordering it to go away. And perhaps, my dream-state was insisting that if I spoke the words in Spanish, the woman would understand me. Maybe it was my spirit recognizing that this mass of one-and-half-by-two-inches that found a home inside my skull was a foreign body that has no business being there. Why Spanish, a foreign language I am currently learning, came to symbolize the solution? There are a few speculations for another time. But, what I marvel at is how the mind finds boundless ways to soften harsh realities of our life journey.

That nightmare came on the same day my husband and I met my neurosurgeon, a gentleman about my age. His medical credentials, stellar: current Chair of the Department of the Neurological Surgery. Graduated with honors from Harvard Medical School, Rhodes Scholar among a long list of impeccable achievements. 

That long awaited consultation took place on March 1, 2019. Landing an appointment 9 1/2 weeks  after a general referral was sent by my primary care doctor, made for a long, hand-wringing-filled few weeks. When I told my neurosurgeon how long I waited, even he was bewildered. He said it should have taken no more than one week. This is something he is trying to change. Then, he gave me his cell phone number for when I ever needed to reach him. The gesture was a good sign from the Universe. 

Headed to my Neurosurgery Consultation. ©James Sobredo

That meeting was enlightening. It was hopeful, alarming and comforting all at the same time. My husband and I saw with our very own eyes on the large screen the visual from the MRI taken on December 21, 2018 of the mass in my head. 

I was told that I needed a more current MRI before the surgery. I think it’s called PET-MRI (Positron emission tomography-Magnetic Resonance Imagery). It was needed for a precise and molecular image of the brain. Another thing I had to mentally prepare for. Had I mentioned that I dread tight places and jarring harsh noises in my ears? Believe me, the ear buds the imaging technician gives you during the procedure do not shield one’s equilibrium. 

Even when I think I do everything asked of me in order to keep my medical symptoms at bay…I take precautions to reduce risks of adverse effects from medications I ingest. I avoid the sun. I avoid exposure to infections to which I am vulnerable because of a compromised immune system. And I am diligent about taking all the medications every freaking day of my life these last few years. Yet the body still rebels? The body acts like it is at war with itself. What could one do?

All those precautions are for naught when an infection arises at the worst time and in the most inconvenient locations on the body. I try to rise above all of it. But at times, I break down. Irrational emotions erupt. Uncontrollable tears pour out. Maybe out of self pity, maybe out of disgust about what the health-gods have dealt me. And by now, the Universe must know that it hasn’t dealt a card in this game of life that I have not faced with steely stubbornness and even grace. But, it is damn exasperating at times. 

My body needed to be at tip-top shape in preparation for my surgical procedure to remove the mass from under my skull. Just then, I faced some low grade throat infection and thrush/yeast infection on my tongue. The prednisone pills I take for anti-inflammation makes me susceptible to these types of infection—viral or bacterial. The drug does not discriminate. The weakened body is at a loss. The drug has no feelings, no conscience, no investment in my well-being. It pretends to help. It pretends to moderate the pain. But at what cost?

My life routines had to be literally put on hold until the scheduled date of neurosurgery. That date was confirmed for March 14, 2019. And the PET  MRI must be done beforehand on Sunday, March 9th. 

I must wait for the rest of the details: what time to report at the hospital’s  Admissions Office, time of surgery, and precautionary instructions for me as I prepare for that event. It’s interesting that the surgical procedure on the fated date was to occur in an operating theatre where medical students or other doctors could view the procedure. I was to expect a call no later than two days before March 14th. On March 11th, someone from the anesthesiology team would call to interview me on my medical history and confirm the list of medications I currently take.

It’s like living in mystery--as all would be revealed in due time. That’s what it felt like. The whole thing had all the elements of a Shakespearian drama, hopefully not, since that never ends well. Maybe not, more like a television soap opera. You know what’s going to happen; but you are not allowed to take a peak at the daily script.  Keep away the script from the actors to keep their acting skills fresh, I suppose. But this is real life, and I literally feel like being on the precipice of a cliff,  precariously leaning to view the outcome of my own story. 

I was eager to get the PET-MRI out of the way. The results could help show the activity of the mass in my brain. My family accompanied me at the Imaging Center of the hospital on a Sunday, March 9th and we arrived early at 2:45 p.m. for a 3:15 p.m. appointment. We wanted to make sure we allowed room for the unexpected. And as I surmised, when the technician had to inject a dye, it took at least three attempts to find my deeply submerged vein. But what’s a few needle pokes to my arms and hands to test where the butterfly needle would meet its match? It did get done. The waiting was nerve-wracking: so was the uncomfortable procedure. The procedure was over by 5 P.M. 

My husband and son kept me entertained and occupied for the few days before the critical phases of the upcoming day of the “reveal.” The day the Right Frontal Lobe Craniotomy would be performed.  Hubby planned a relaxing dinner out at Kyodai on the night before the scheduled surgery. Eager to put aside concerns for tomorrow's surgery, I cheerfully celebrated by watching basketball on television at the restaurant. The Golden State Warriors team was a pleasurable distraction. I was counting on the Splash Brothers, Steph Curry and Klay Thompson. They accommodated with a nail-biting team performance of 106-104 over the Houston Rockets. 

Mussels and Bread at Kyodai. ©Lu Sobredo

Shrimp/Vegetable Tempura at Kyodai. ©Lu Sobredo

Extreme patience is a learned virtue I suppose, a muscle memory of sorts. I see it in spades in my husband and son who are caregiver-survivalists. Living with me and my medical trials? It was bound to happen. 

The phone calls came. The representative from the anesthesiology team reached me. They did a thorough confirmation of medications I take and current and historical medical conditions, especially as they affect the anesthesia for the surgery. The representative from the admission team called to walk me through the preparation for surgery. I must report at the Admissions Office of UC Davis Medical Center’s main lobby at 5: 15 a.m. The last clear liquid intake must be no later than 3:15 a.m. I will meet my pre-op nurses shortly after I get admitted.

That fated day of March 14, 2019 came. I awoke with quiet anticipation for one of the most important verdicts of my life; something I’ve nicknamed the reveal. Was I ready for what was to occur? Despite the trials placed along the way of this life journey, I have been immersed and cloaked in blessings galore. My husband made his career and life choices with me in mind and with our son by our side. Our shared life events have been too numerous to recount in one hour while waiting to leave for the hospital. I have an unbelievably dedicated and loving network of extended family and friends all over the globe praying for me. 

I took a quick shower and was dressed by 3:30 a.m. Took the prescription meds I was allowed to take with a sip of water at 3:15 a.m. The last clear liquid my body could have before the operation. My family woke up in time to get ready to take the hour drive to the hospital and with time to spare before checking in for a 5:15 a.m. admission. It was a beautiful brisk winter morning at 43°F. 

 Dark Early Morning Arrival for Neurosurgery Day at the Hospital. ©James Sobredo

The Hospital in Daylight. ©James Sobredo

Throughout all of this I was relatively calm, pensive, albeit expressionless at times. As the day got closer I felt positive, engaged as well as detached. After all, what was about to happen was out of my hands. I have done all the preparations on my end—the lab tests, the waiting, the hand-wringing, sobbing, anticipating and praying. Further infections averted. My soul, fully soothed. Now everything else was in the medical experts’ capable hands. And I had all the faith in the world that everyone involved would be filled with the kindness, grace, alertness and wisdom as the Holy Spirit would will it. 

THE REVEAL

A hint of tension permeated the air when arriving at the hospital that fated day on March 14, 2019. I stepped out of the car and felt the cool morning breeze striking my face. The brightly lit lamps in the parking lot obscured from my mind the darkness that surrounds 5:00 a.m. However, nothing could obscure the reality of my impending brain surgery. 

My son kept me company while his dad parked the car. Mr. Aguirre greeted us at the Admissions Office on the appointed time of 5:15 a.m. He likely utters the same bureaucratic words to all patients as he explained the documents I had to sign. Yet, he had the right amount of warmth and his own brand of humor, making our interaction genuinely personal. 

Mr. Aguirre Securing My ID Bracelet. ©James Sobredo

Once the hospital ID bracelet was safely around my wrist, my son, hubby and I headed to the elevator that would take us to the third floor. Hardly anyone was at the hospital lobby except for workers. 

In quiet my family rode the elevator with me to the third floor. A nurse at the counter (nurse #1) told me to take a seat after she checked off my name on her list. I barely had time to select where to sit in the waiting area when another nurse called out my name (nurse #2). She also explained to my family that someone would escort them to the pre-op room to see me before surgery. She exuded such friendliness that without hesitation I waved good-bye to my family, followed her to the pre-op room, and put on the hospital gown as instructed. Before Nurse #2 exited, she advised me that my pre-op nurse would come talk to me about the next steps. I didn’t get the names of the first two nurses as the whole interaction took seconds. Therefore, knowing full well that I might not recall much after the surgical procedure, I asked my son if he’s still in the room to record on his cell phone the names of the attending medical staff from then on.

Two more nurses later, Joyce (nurse #3) and Peggy (Nurse #4), I wondered how many more nurses would be assigned to my case that day. Each worked in tandem with one another to take my vital signs; ensure the patient record was accurate; ascertain that my health directive was in place (in case something happened and I couldn’t make health decisions for myself); and connect me and the needles to the IV. Each step at the pre-op was to bring me closer to the moment of surgery. It felt like I was watching the peeling of the onion one layer at a time--methodically and with precision. And this went on a few more times within a span of an hour or so. 

When all was said and done at the pre-op room, I have met two nurses, two anesthesiologists (Dr. S and Dr. B), the medical resident (Dr. O) who would assist in the surgery (an additional one was already in the operating room); and two surgical nurses (Nurse #5 and Nurse# 6) whose names faded into ether land once the anesthesia drugs took effect. Of course, the head neurosurgeon (Dr. H) was already dressed in scrubs, and he peaked in, smiled, waved and assured me, “We’re ready for you.” The Right Frontal Lobe Craniotomy was scheduled for 7:00 a.m. 

The operating theatre, aka operating room, was reserved for four hours for the surgical procedure. It was like a theatre production, but at a teaching hospital. And I was not in the audience during the act of peeling the onion. I was in the center of it all; hooked onto IVs, connected by needles and probably tubes to what I presume to be life-sustaining devices and contraptions. My body was kept comfortably warm by a lightweight, puffy, paper-like blanket inflated by heated air. The multiple curtains being peeled toward the scene when all would be revealed kept me enthralled enough: the surgery itself subsumed in the drama of it all.

The tranquilizers injected into the IV was meant to relax me. It lived up to its intent rather quickly. I do recall my husband and son in the pre-op room. Clearly etched in my mind were their hands touching mine, and the kisses on my forehead accompanied by voices (theirs and mine) saying, “I love you.” 

Hubby in the Pre-Op Room. ©James Sobredo

The last sliver of memory was the sensation of being wheeled off on a gurney. Drifting into unconsciousness was like fainting, but much more instantaneous. Grateful that the anesthesia was extremely effective. I have absolutely no recall of the time of surgery.

Being Wheeled into the Operating Room. ©James Sobredo

Being spared from the pain during the operation was a much welcomed and appreciated blessing. The severe pain felt hours after the operation was another story. The reverse process, when emerging into consciousness after being under anesthesia for about three hours, does not happen suddenly. That I discovered. 

Several hours later, with my eyes still tightly closed, I heard the sound of voices chattering around me, which gradually increased. Hallelujah! This was major cause for celebration. It meant I came out of the surgery very much alive. As I opened my eyes, a kind female voice greeted me with, “You’re awake.” Her name was Grace (nurse #7). She proceeded to ask: my name, if I knew where I was, if I could tell her the month and year, and what surgery I just had. All my answers pleased her, which I suspected declared me fully awake. Or perhaps she was happy to confirm I was the patient as indicated on her list. I was lying on an incline position with my head tilted to the left. There was no sensation on the right side of the head, only the feeling of my body floating but with heavy rocks pressing down my skull. I knew I was in the post-op, recovery room.

My throat was dry, scratchy like sandpaper as I swallowed. I spoke, but it wasn’t immediately clear if the nurse heard me. When Grace asked what my pain level was, I felt like I was in the twilight zone and the grogginess made it impossible to judge. She gave me two choices: Oxycodone or Extra Strength Tylenol. My choice? Tylenol, of course. Besides, I was apprehensive about taking heavy duty pain drugs, so I stayed quiet for sometime. In contrast, my husband told me my neighbor who was already on maximum dosage of morphine kept asking for more. His Filipina nurse kept replying: "You are already on maximum level of morphine. Only your doctor can approve a higher painkiller." 

In the back of my mind were flashes of communities ravaged by opioid use in the U.S. Images of lives destroyed reported on television, in print, and social media were fuzzy in my mind. But they were on my mind. Thus, I am very cautious of taking excessive pain drugs and becoming dependent. Even at the height of my jarring toothaches and excruciating RA pains in the past months, I did not succumb to the prescribed painkillers outside of extra strength Tylenol. 

A few minutes later, I felt something was wrong. “Was that a drip of water on my right shoulder, please look,” I begged the nurse. I was glad to have found my voice. Scratchy throat and all.

Grace quickly said, “Don’t move. Don’t touch. It’s blood from the incision.”

She promptly paged the resident on duty, a third year resident, Dr. O who assisted in the surgery.

Just then, my husband and son were allowed in the post-op recovery area. I was comforted by their presence. First time we laid eyes on each other since our early morning goodbyes before I was wheeled away. Shortly, Dr. O appeared and inspected the incision. (I nicknamed him in my mind as I did the other doctors, based on the first letter of their last name). It turned out, my incision needed one more staple. I heard him ask for a staple gun. I imagined it to be a small medical staple gun, not wildly different from an office staple gun.

“I’m sorry, this will sting,” he warned.

He calmly, but firmly ordered the nurse to add morphine and pain killer  to my IV. In my head, I questioned: Both? Yes. Both.

“Sorry, I might need to put three more staples. Here comes the sting...And another sting... And another.... Done.”

No freaking kidding me, I thought, but did not utter the words out loud. Later, my husband confided how difficult it was for him to watch knowing my anesthesia was wearing off. My husband surmised that it must have felt like stapling your finger accidentally. Except, this was stapling into my skull, and it was deliberate. The pain felt raw. Just think, since staples were used, it meant at some point staples would be removed. 

“Just breathe,” I mused. Breathing meditation helped. The bleeding stopped. The pain medication eventually worked wonders. Even my RA-afflicted joints benefited from all the pain-numbing drugs.

My recall was fuzzy, but apparently a resident anesthesiologist came by to check on me at post-op. Anesthesia comes with its own risks. In fact, it is often the most dangerous part of surgery. It’s best to be cautious to ensure risks are reduced and mitigated. Luckily I did not have side effects to be concerned about. 

What was my physical state when the pain drugs took effect while in post-op? Imagine an invisible helmet crowding and pressing heavily against your skull. The feeling and the image of such should have been unsettling. However, the drugs worked swiftly. I rested, oblivious of my surroundings and the other post-op patients who were in varying stages towards consciousness.

At Post-Op With My Son. ©James Sobredo

While rising from a deep sleep at post-op, some memory returned. Not anything about the surgery, but about my neurosurgeon Dr. H peering into my bed area to say they were able to fully remove the tumor which the modern medical world refers to as the "mass." The most important part was that the tumor had not attached itself into the brain, except for the threadlike portion that held it in place. It was a matter of lifting it whole. The verdict? The mass was benign. The biopsy would of course confirm for sure, but not for another month or two. This time the waiting would be worth it.  

Another good news: I would skip the need to be in the Intensive Care Unit (ICU) altogether. Until a bed opens up in the Neurosurgery Unit, in the East wing of the 5th floor of the hospital, I would have to stay in post-up. Another bed did not open up until after breakfast the next morning. They relocated me to a more private and quieter space of the post-op recovery floor for that first night. 

The revelation. The good news left me speechless. The tumor was benign! I was thankful for the outstanding performance of the surgical team, the whole medical team which included anesthesiologists, surgical nurses, surgical residents and the lead neurosurgeon. I was overwhelmed by the outcome. The fact that the tumor was benign finally sank in. My family and I breathed a deep sigh of relief. I won’t have to endure any toxic post-surgery treatment, like those we’ve known including those we’ve loved. For example, my own mother and mother-in-law in their battle with cancer that took them from us too soon. My Mom Patty was 53; my Mom-in-law Violetta was 65. My eyes welled up. My husband kept saying, "You're one of the lucky ones." He offered to show me a picture on his phone of the mass that was removed. Dr. H had taken a picture of it with his cell phone and had shown it to my husband after surgery. A copy of the photo now exists in hubby’s phone. 

I said, “NO.” 

I just wasn’t ready. Five weeks after the surgery, I still am not. I don’t even know what the outline of the incision looks like. I refused to look in the mirror. I could only imagine it these days as I live through the roller coaster process of healing. As the hair slowly grows back from having been shaved for surgery, perhaps I am shielded from ever seeing it.

TO BE CONTINUED…

(Stay tuned for additional details of this pot-hole in my life journey. My three-night stay at the hospital after surgery was a lesson in navigating the recovery process, incident of the first meal post-surgery, hospital roommates, more nurses and the healthcare system in general. The healing process so far has had its hills and valleys, but I am simply grateful the healing is on track. I am told it’ll take up to a year for my head to feel normal again. I resumed medications for my chronic RA, but not soon enough before the joint pain resurfaced once the anesthesia and pain drugs wore off. Such is life. And that’s just it, I am alive.)

©Essay by Lu Sobredo

ALL RIGHTS RESERVED

ACKNOWLEDGEMENT:
Thank you to Adrian Sobredo for helping edit this essay and to James Sobredo for the remarkable photos.

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WORLD IN MOTION: PART III 

Navigating the healthcare system…

I am in recovery after a successful craniotomy. My world is no longer spinning from vertigo. But I was nearly put at risk while I navigated the healthcare system. 

I could only say goodbye in my thoughts and in my heart. I couldn’t travel. Whether a few-mile-drive to the chapel or a few thousand miles on an airplane, it was not in the cards for someone who had surgery only weeks before. Winter storms may be long gone. Yet, I mourn. Not because winter exited. I mourn because this spring, three beloved members of my extended family left this earth within days of each other.  (See back-story: World in Motion: Part I and World in Motion: Part II).

Springtime had softened the sadness. Then June arrived. The heatwave came too soon and caught my family by surprise. The heart grieving and the body still recovering from surgery were caught by surprise. One weekend we drove from Central Valley to the San Francisco Bay Area, thinking we could escape the heat. Warm weather unusual for the coastal area welcomed us. Not the relief we sought.

Then, there’s the nagging cough. The stubborn cough from an early summer cold lingered for its dear life without regard to mine. For every time I coughed my ribs ached, so did the right temple near the edge of my incision from surgery. A cough-induced headache threatened to ruin my disposition. But my largest concern was the threat of pneumonia. Not a good pairing for my RA condition. My primary care physician assured me my “lungs are clear.” He sent me for chest x-rays just to be sure. Now we wait for results. 

Waiting is a familiar plot. The follow-up visit with my neurosurgeon scheduled in two weeks can’t come soon enough. The hot weather, residuals from colds and trappings of major medical conditions appear keen to push me over the edge. To which my husband urged: “ Cry. It’s ok to cry,” after he finished giving me one of two weekly injections for my RA. So, I cried. 

Sobbing sometimes can be incredibly cathartic; so can reflecting on my hard-fought triumph of sorts when navigating the world of being an in-patient at a hospital. 

University of California Davis Health | Medical Center. ©James Sobredo 

Hospitals and I were never a good match. With hospitals, I never wanted a long term relationship. My late mom would tell me that even as a toddler, I cried when heading to a medical clinic or a hospital for a vaccine. I dreaded needles until I was ten. As I grew older, I’ve learned to cope with the phobia.

I managed to avoid hospitals as an adult, except for a couple of surgical procedures as an out-patient during the last decade. That meant staying in the hospital recovery room for a few hours, long enough to safely wake up from anesthesia. The only time I actually spent two successive nights in the hospital was when our precious baby arrived one month earlier than due. He was considered a premature birth. So baby and I stayed one additional night for observation. It was medically wise to make certain there were no complications to baby’s health. That was a little over two decades ago. 

HEALTHCARE PROFESSIONALS ARE NOT ALL ALIKE

This time around in March 2019, I stayed in the hospital a little longer. I suppose having your skull partially cut open to remove an invading mass required it. Luckily for me the tumor turned out benign. At first, the neurosurgeon anticipated for me to stay in ICU (Intensive Care Unit) for a day, for a total of a four-day hospital stay. 

Son By My Side After Surgery. ©James Sobredo

A surgical procedure could be stressful enough to family members. Commuting on California freeways would be another source of tension. Aware of a two-hour roundtrip drive between home and hospital, I reserved a hotel room for hubby and son. Conveniently, there is a Marriott Hotel on the medical center grounds. The out-of-pocket expense was worth it to have family near me. I could not have surmised that I would encounter another jolt navigating the healthcare system. That happened. I definitely needed my family’s presence as it unfolded. That experience serves as precautionary warning for navigating our healthcare system in the future. This wasn’t the first time I played patient advocate for myself. Sadly, it might not be the last.

I was extremely grateful, in fact tickled out of my head (no pun intended) when my surgery went so well. I salute the awesome surgical team! The mass was totally lifted out from under my skull, I actually bypassed the need to be in ICU. I stayed overnight in a private room of the  post-op area as no beds were open at the Neurological Surgery Unit on the fifth floor. 

Twenty-four hours later, a bed was vacated and I finally had space to move into. But, before leaving the post-op area on the first morning after surgery, a female physical therapist (PT) and a male vocational rehabilitation specialist unexpectedly showed up at the foot of my bed. I presumed they were there to assess my physical status after surgery. The PT asked if there were stairs at my home. I said, “Only two steps to go up the front porch. Otherwise, we have a one-story house.”

The PT demonstrated how one goes up the steps with a walker. The guidance was to ease my transition from having full hospital care to being cared for by family at our home. My one and only son, now a young adult was by my side to ensure a family member took note of the instructions. The vocational rehab person never engaged with me. He spent his time chatting with my husband, and not about my medical condition. 

Despite being in pain from craniotomy, feeling loopy from medications and quivering from residuals of the anesthesia, I still cooperated. I  practiced on using the walker. I struggled to focus on instructions given,  but stayed determined to push myself to move with a walker. I persisted. I was mostly motivated by the need to walk to the communal bathroom with help from my son if a nurse is occupied. There was just something uncivilized about using the commode inside the post-op room. Irrational, I know. The PT undoubtedly observed how motivated I was to use the walker. 

Much to my chagrin, the PT had concluded I was ready to go home the next day. Although, I don’t recall her saying anything to me or my family. Had this PT conducted a follow-up visit the next day, she would have observed I was weaker. My balance was off. And walking even with a nurse’s assistance to use the ensuite bathroom was a struggle. I felt heavy pressure, numbness, and pain in and around my head. The pain medication suppressed the symptoms up to a point. I felt helpless.

My medical readiness for release from the hospital was being discussed on the second morning after surgery. I sat in the bed, stoic. My family  was in disbelief. The female nurse-in-charge was hesitant regarding my release, but it wasn’t her decision. The male Nurse Practitioner (NP) representing my neurosurgeon was taking the PT’s report to heart. Additionally, he obtained input from my morning nurse. This was the same nurse that as soon as she took over my care, I felt unsettled. As it turned out, my instincts were right on, as her input proved hazardous to my well-being.

About the morning nurse: she would never get a nomination from my family for Nurse of the Month, not even Nurse of  the Day. Don’t get me wrong. Although a bit abrupt when she spoke, she did take care of my basic hospital needs for a couple of hours: dispensed necessary drugs, delivered my breakfast and additional ice water, and accompanied me to the bathroom a couple of times. Regrettably, she spoke unwittingly about her own flu/cold/cough, and how she shows up at work even though she still has symptoms. Hinting at her own unselfishness “to be there for her patients” did not shout altruism to me. Listening to her ramble about herself? Extremely  annoying. And this was before I realized what she had said to the NP. But I kept a polite interaction, regardless of my pain from surgery and discomfort from having her around.

I suffer from RA. My immune system is compromised. After an invasive surgery, an unknowing dim-wit exposed me to flu germs. I had other colorful words for her besides “dim-wit.” I stowed those away in my thoughts. And she had the temerity to whisper to my son, although within my earshot: “Watch out for your mom’s changes in mood, memory and temper because of the surgery.” 

Then, she casually asked my son: “Have you noticed when talking to her how much she doesn’t remember things, could get short-tempered or just different?” 

To which my son quickly said in retort: “No! And what do you mean? She is the same mom even with all that she’s gone through.” 

Not the least bit amused by the conversation, my son gave me that glance. The kind only understood between parent and child after we’ve reached the same conclusion: someone had lost her marbles. Sonny later shared how he found her manner disturbing, judgmental and gossipy. I, too, wondered if it was her place to explain to my son what the possible effects of the surgery might be? Hubby was at the hotel during all of this, but would join us later. This morning nurse was only with me for a few minutes during the span of two hours since she had other patients in her care. But the damage to me could have been long lasting.

Later that morning, when my surgeon’s NP announced to my family that  that I would be released that day after only two nights in the hospital, I became teary. I objected when I found out the decision was based on the PT’s report and feedback from the morning nurse. Never mind that I was in severe pain, shaky, and unable to get myself out of bed safely. I was fatigued from the throbbing in my head, and there was still bleeding from the incision. 

The NP must have taken my objection into consideration. He left the room. I presumed, to review my records. And as I suspected, to consult with my surgeon by telephone.

Just as I started to plan a more vigorous protest (all this as my head was throbbing despite numbing drugs), by happenstance a patient advocate representing patient rights came by to see me. At this point, she did not know I was slated for release. She explained that hospitals are often under pressure by insurance companies to reduce patients’ hospital stay.  That the patient or patient’s family has the right to protest if such circumstance occurred. Without wasting time, my husband immediately called the phone number given to us by the patient advocate. We launched the appeal before the hospital could officially release me or demand my signature.

Thank God, I am one of the fortunate ones with a robust health insurance. Thank God, the charge-nurse was cautious and supportive. I suspected the NP spoke with my neurosurgeon who also later called to support me on receiving one or more days of hospital care as needed. My family and I were convinced that early release from the hospital could have potentially put my safety, recovery and quality of life at risk.  It could have alarmingly placed at a disadvantage my family’s ability to take care of me. As my husband pointedly expressed to the NP and to the charge-nurse, my early release would have demanded from him medical skills for which he was not trained to give. It’s not like he would be attending to someone who has the flu. Seeing my physical and emotional state, my husband was especially perturbed that he would likely drive me back to the hospital emergency room once we got home. 

I spent one more night at the hospital.

The next day, I cringed at the thought of seeing the same morning nurse. My aggrieved spirit felt that she came from the dark side bent to disrupt the flow of positive chi. Was I ever relieved that she did not return the next morning. All the other nurses and charge-nurses acted professionally: knowledgeable, kind, efficient, and focused only on administering care. Not in the least bit self-absorbed. Kudos and gratitude to them. 

A crucial lesson learned from this experience: know your patient rights, and question decisions rendered by medical staff if different from yours or your family’s better judgment. Listen to your body. There are healthcare professionals who are not necessarily after your best interest. I know this, not just from this recent experience. I have been my own patient advocate for six years since being diagnosed with severe RA, an autoimmune disease without cure. I count my lucky stars that I’ve found compassionate and skilled doctors along this fragile health journey. I’ve considered not describing the morning nurse as being from the dark side or as being despicable, and the one PT as being incompetent…One never knows what affliction or grief they are under. My spirit nudged me otherwise. I trust their behavior was an anomaly.

LIFE AFTER SURGERY: NOT AS DISMAL AS IT FEELS

Two-nights on the fifth floor meant listening to non-stop activities by the nurses’ station. It dawned on me how peaceful it is at home. During the nights at the hospital, I heard doorbell-like sound from patients summoning nurses to their room. One male child’s voice groaned from a room nearby. Another restless patient must have walked up to the nurses’ station a dozen times. Judging by his voice, I would guess he was a middle-aged male. He was incessant in asking for more morphine. It’s like listening to a broken record all night. I could hear the  nurses at various times firmly telling him that he has already taken the maximum dosage that could be given safely. His doctor would have to authorize anything stronger. The one time the nurse asked if she should call his doctor, he dejectedly said, “No.” But even with all the commotion disturbing my insomniac self, I appreciated the additional night at the hospital. Where medical expertise is a touch of a button away. 

I shared the hospital room with two roommates on two separate nights. Watching them and listening to their personal stories helped me realize that my health situation was not as dismal as it feels. Besides, I have lived long and traveled far in comparison. We did share one thing in common, we were patients with a life-changing diagnosis and/or surgery. Evident was the resilience, even though we each had a unique way of handling our health circumstances. Resilience loomed large amidst the hustle and bustle, the noise and distractions in a hospital. My conclusion? A hospital is not a place where true healing occurs. And still the human spirit rises.

My first roommate was pleasant and soft-spoken. She had a genuine curiosity about her. Her brain surgery did not require cutting her skull. The operation was achieved through her nose. She was in writhing discomfort, and would quietly ask the nurse for pain meds. I believe she was 23 years old, a college student who had to delay taking courses due to health issues. I listened with empathy. She expressed a longing to be part of her divorced parents’ ethnic communities. Both sides had rejected her while growing up because she was of mixed race. Although, there was now effort within the separate communities to connect with her. She spoke of the outdoor adventures she’s missed because of her medical condition. I didn’t totally comprehend her diagnosis and I chose not to inquire in deference to her privacy. We promised to stay in touch. Facebook has made that possible.

After the medical decision to keep me in the hospital, I noticed my second roommate arrive that afternoon, soon after the first one was released. My newest roommate was a petite 25-year old dynamo oozing nervous energy. I suspected that if not feeling unwell, she could speak a mile a minute. She spoke in a raspy voice, somewhat high pitched with a fast cadence despite her apparent fatigue from surgery. Her repeated requests for the nurses to take her to dialysis did not go unnoticed, although not as swiftly as she would have liked.

The brightness in the room from its expansive window bothered her. So, I had my son lower the blinds. I smiled at her refusal to eat hospital food. She instead asked her step-mother to bring her a McDonald’s breakfast by morning. Momentarily I forgot about my own pain as she enumerated her medical challenges: debilitating foot issue at 8; kidney failure at 22; and spinal vessel brain issue at 25. 

She was distraught by the itch on her head caused by blood that had dried up on her scalp since her brain surgery. I noticed dry blood (specks of it) on my own hospital gown from my incision. Too insignificant in the larger scheme of things, I ignored it. But she was agitated by the dry blood swarming her bed linens. It made her itch all over. So she asked for new bed covers, and for more meds and lotion to numb the itch and pain. I felt helpless for her. Her impatience to forces outside her control was exhausting to watch. However, her fighting spirit was unmistakable. I wished her well when I said my good-bye the next morning, the morning of my release from the hospital.

Heading Home from the Hospital. ©James Sobredo

THE HEALING JOURNEY CONTINUES

It was my first night home from the hospital on March 17, 2019 on St. Patrick’s Day; a holiday stereotypically celebrated with alcohol. No alcohol consumption for me. Sedated, yes. Yet, strangely aware of the loving attention from my husband and son. It seems fitting that my first meal back was compliments from Kyodai, a favorite Japanese restaurant in my hometown where I had my last dinner before surgery. When hubby picked up a phone order, the owner refused payment. He said, it was his treat. This kindness and the sweet messages from family and friends, from near and far via phone text and facebook stirred the heart. So did the yellow flowers and a get-well card from a dear neighbor.

But by midnight, I was awakened by a whimper. Sadly, my own. My darling husband tightened his grip on my right hand as we slept. Another dream. My heart was thumping. My spirit felt conflicted.

The image clearly placed me in some science laboratory. I recalled signing my name on “thank you” cards. I presumed maybe they were for the medical team—hospital nurses who especially left a good impression. I was aware that someone else was across the lab table from me also working on something when the electric lights nervously flickered. The room darkened. In a panic, I walked out of the room ushered by a middle-aged or older woman. Distressed over this unexplainable event, I turned my neck longing to look at her, but careful not to snag the bandages covering the incision on my head. I noticed her left arm holding my right was light skinned. Her facial features resembled the poise, beauty and grace of my late mother. She calmly whispered, “Come with me.” She wore a black veil made of lace ever so intricately designed, the kind one wore to church at a solemn  mass. A funeral. 

My chest tightened. I miss Mom. And here she was in my company after my potentially life-threatening medical procedure. But the surgery was done successfully. Even in my dream, I knew she would have to return to heaven. It wouldn’t be right for me to join her. I must say goodbye again, as much as that pained me. 

I heard myself respond, “Where are we going, Mom? I can’t go with you.” In that precise moment, my husband who was lying with me in bed, squeezed my hand even tighter. I woke up. Tears flowed. I survived a harrowing medical scare. I laid there transfixed and in awe of life, knowing full well there’s a thin line between earth and heaven. That transition could happen at a drop of a tear. 

A little over three months had passed since the surgery, the day of the reveal. The period of healing has had its share of hills and valleys. Yes, the mass was benign, but my neurosurgeon expects to keep a close eye and will order another MRI once a year for the next two years. He wants to be vigilant in the small chance there might be new growth. For now, the biopsy showed a benign meningioma; no chemotherapy or radiation required. 

Gradually, I have  gained clarity on what could be happening inside my skull. This one night was particularly muggy as I fell asleep. The heatwave typical in July or August which came in early June made for  restless sleep. I finally dozed off by 10:00 p.m. only to be awakened by a shooting pain in my head at its apex at 1:30 a.m. When a similar phenomenon happened at post-op, the nurse described it as visceral pain. I described it as wild pain taking an inconsiderate joy ride in the incision. From under my skull, a sensation of a tiny chisel etching nonsensical designs. Hubby being a night owl heard me groan as I pressed my hands around my head. He asked if I needed an ice pack. I said, “Yes, please.” 

A neighbor who specializes in neuro-care nursing later explained the condition. What I experienced is called vasospasm—the contraction of blood vessels. It could happen again and again during healing but only for brief periods.

This time, I wasn’t having a nightmare. And indeed, the ice pack calmed down the intense pain. Later, pain gave way to itchiness along the incision. The itch simulated a slow miniature train gently running on its tracks. A sign my incision is definitely continuing to heal. I did not panic.

These days, I’ve continued physical therapy to address weakness and muscle atrophy from inactivity; both have affected my balance. With my hubby and son’s help, I have visited our sailboat and braved the 1/4 mile walk on the docks even on windy days. The rocking sensation was not alarming at all. It was no longer from vertigo or lightheadedness from the pressure in my head. The rocking sensation was either from the south easterly wind swaying the boat or triggered by family when coming on board or exiting from it. 

Physical Therapy in June. ©Adrian Sobredo

The medical team of in-home nurses, speech and physical therapists, a neuro-nurse in my neighborhood, and a new physical therapist are my smart angels of healing. Overtime, they have collectively helped me understand the science of my post-surgery experience. Vasospasm, itchiness, throbbing pain, and pressure visit my head periodically. One or all symptoms crop up without notice, usually in the daytime or while awake, but no longer in the middle of sleep. When it happens, I imagine there’s increased circulation, blood vessels contracting, and synapse in the skull severed by incision in surgery springing back to life, or sparks from new synapses being born. 

My brilliant neurosurgeon simply puts it: “Nerves are growing.”

All I know is that the pain and itchiness from nerves growing vary from dulling to throbbing. It’s no wonder I feel like a science experiment. 

The nightmares seem to be a thing of the past for now. Healing from craniotomy is more or less on schedule. I am told it’ll take up to a year for my head to feel near normal again; for me to feel near normal. But why wait for near normal to do silly, impetuous acts? Like running through the garden sprinklers as water sprays in choreographed randomness on a hot day. Perhaps walking and twirling gingerly onto the lawn, with the sprinklers on, was more my speed. “I should do it while I can,” I told myself. And for a few moments, my world was in motion by choice and on my terms. Besides, what a gloriously crazy way to while away a warm evening in June. A re-enactment from my youth.

Cooling Off on a Hot Evening in June. ©James Sobredo

Grateful that by June, my RA symptoms were manageable. Grateful my doctors let me resume medications for my chronic RA two weeks after getting home from the hospital. By then the staples from my skull were removed. The incision was sufficiently, although not completely, healed  and risk of infection was low. But none too soon before the inflammation, joint pain and stiffness resurfaced once the anesthesia and pain drugs wore off. Such is life. And that’s just it, I am alive. 

©Essay by Lu Sobredo

ALL RIGHT RESERVED

ACKNOWEDGEMENT: 

READERS: Storytelling has been a comforting outlet during my period of healing. Thank you all for engaging. 

FAMILY: I don’t have enough words to express how much love and gratitude I feel for my hubby and son for their sacrifice to take care of me.

SURGEON: My surgery was a success. Special thanks to my neurosurgeon, Dr. Griffin R. Harsh, IV and his team for the excellent care I’ve received. Dr. Harsh is the Julian Youmans Endowed Chair of Neurological Surgery, Professor and Chair | Neurological Surgery at UC Davis Health Medical Center. 

About the Author 
Lu Sobredo is writer/publisher at Lu Travels Abroad, a blog dedicated to folks whose limitations do not hamper them from traveling. A year into early retirement her world collapsed from the diagnosis of Rheumatoid Arthritis (RA). Her total life changed, but she did not let RA define her. With love from family, friends and an awesome doctor, she regained some functionality--her new normal. She will have RA all her life. And she now writes about life and travel with RA. During the pandemic of 2020, she stays put and writes poetry and a first novel, a travel of sorts but in the heart and mind.