Jitu Weusi shown in healthier days. corenyc.org
Looking back to December 5, 2012 when I went for a routine doctor’s visit with my physician of 29 years, Dr. Oliver Fein, I would not have thought that three months later I would be incapacitated fighting my biggest struggle ever – to stay alive.
The day after that visit I received an alarming call from Dr. Fein urging me to visit the colonoscopy specialist because I was experiencing a precipitous drop in red blood cells. I was Anemic. On December 10th I underwent two exams: a colonoscopy and an endoscopy, both were very invasive procedures. Subsequently, I was urged to do another exam, which required that I swallow a pill with a wireless camera inside.
This camera would take all day and night to travel through the 30 feet of my digestive tract.It started with the top 4 feet that included my esophagus, stomach and first portion of my small intestine, called the duodenum. Then down into 20 feet of my small intestine and finally down the bottom 6 feet of my colon and out of my rectum obtaining images all the way.
All of these tests were proactive attempts to diagnose the cause of the red blood cell loss, all to no avail.Shortly after the camera swallowing test something strange happened. For about three minutes the right side of my brain felt sizzling hot like an egg frying and my hand and right eye was moving uncontrollably. It occurred while I was alone.
Although concerned and alarmed I chose to keep this incident to myself.A month later, On Tuesday, January 15th I experienced the same symptoms for a longer period of time. This too, I kept to myself. However, the very next day, I had yet another episode while in the presence of my eldest son, Kuzaliwa Kojo Campbell and my wife, Angela.
I was escorted home and immediately thereafter persuaded to go to the hospital.I was later told it was a seizure. On Wednesday, January 16, 2013 at approximately 11:47 pm I was taken by ambulance to the emergency room of the New York Presbyterian/Weil Cornell Medical Center at 70th Street and York Avenue in the Upper East Side of Manhattan of which Dr. Fein has affiliation.
After arriving and providing staff with a recent history of events, examinations began immediately.The staff conducted a CT scan of the head and a chest X-ray. While waiting for the results, I took notice of my surroundings for the first time. I observed a scene straight out of an episode of MASH.
All around me were people—hospital staff and patients alike. Space was limited; there were beds in the hallways, and the family waiting areas were transformed into make-shift rooms.The hospital was severely impacted after Hurricane Sandy hit, closing two other NYC hospitals.
It would be two days before I would be assigned a bed.At 2:45 am reports from the first tests returned – a mass was detected on the right frontal lobe of my brain which was causing the seizures. Also, a large mass was seen on my lung. In the next few days, while still in the emergency room, I underwent more tests, which produced more questions.
More CT scans were taken of my abdomen and pelvis as Cancer was being speculated — but the specific type of cancer was unknown.Yes, Cancer. “The Big C”.This was a surprise to me. I was not in pain. How could I possibly have cancer? The hospital had their team of doctors that attended to me going forward. They started me on the drug Keppra to control the seizure.
They arranged for a biopsy of the lung mass. The results were conclusive. The results were surprising. The results confirmed that which was mere speculation the day before. Metastatic Renal Cancer.The next morning, a team of Doctors who reported back to Dr. Fein gave me a complete analysis along with their suggestion as to a path to healing.
My family on the ground with me included my wife Angela Weusi, Dr. Damali Campbell-Oparaji, Kweli Campbell and Kojo Campbell. They would form a team to help with the analysis and help answer any questions that I had. The additional tests that were taken revealed additional masses on the right hip and the kidney.
The diagnosis was that I had advanced stage renal (kidney) cancer that had metastasized to the brain, lung and my right hip. A message was drafted to send out to the family and community as to the diagnosis at the time. The Dilemma of Health Care Decision-Making: The first decision I had to make following my diagnosis was to find an oncologist. Dr. Fein recommended Dr. David Nanus, an oncologist who specializes in cancer of the kidney.
Having been his patient for 29 years, I trusted Dr. Fein’s opinion. After consulting with a neurosurgery team, Dr. Nanus recommended that the first course of action was to remove the tumor on the brain because tumors on the brain don’t typically respond well to chemotherapy. The Neurosurgeon, Dr. Theodore Schwartz, consulted with me and my family about performing brain surgery.
Brain surgery! He claimed that if there was only one tumor near the surface of the brain, then its removal would be easy. Brain surgery–easy?! The neurosurgeon hypothesized that if surgery was done to remove the lesion on the right side of brain and if it was successful, it could slow the spread of the cancer to the other organs. Brain surgery. At this point I needed a moment.
I needed to think. This was a lot to understand. I needed guidance. I spoke with my 86-year-old godmother and best friend of my deceased mother, Alma Carroll, who told me that I should go ahead and do what the doctors suggested because her intuition told her everything would be on my side.
Hearing this is what I needed to make the decision to move forward and to get through the hurdle before me. Soon after testing was done in the PET Scan and MRI lab all was approved for the surgery. On 1-29-13 I was taken to surgery at about 4 pm in the evening. I underwent a right parietal craniotomy and resection of the right prefrontal cortical mass.
The last thing I remember was the head nurse explaining to me the effects of the anesthesia she was giving to me. She told me to relax and enjoy myself. Shortly thereafter, I was in dreamland.
It was about 1:30 am the next morning when I awoke with a headache, feeling like I had a hole in my head. My wife was beside me. I squeezed her hand and told her that I had a headache. She called for the head nurse in the Neurosurgery ICU recovering room to come and deliver pain medication for the throbbing headache I was experiencing.
The drug of the day was Percocet, which allowed me to sleep to the next morning. I was told the following day that the surgery went well, and for a moment I felt like a rap star with a cult following, as various doctors and other medical staff routinely came around to ensure that my post-op experience was going along well. This feeling would soon fade as I began to understand the extent of the surgery.
One of the earliest experiences was a complete loss of bathroom functioning. Bathroom functioning! Because the procedure was to the right side of brain, the mobility of my left leg and left arm was affected. If I can’t move my legs, I can’t walk to the bathroom; something I didn’t bargain for. I became completely dependent on someone else to change my diaper at least a half dozen times a day.
Initially, I was constipated so my embarrassment went undetected. However, four days later, I had a break through and suddenly there was an outpouring of stool. While overjoyed for the intestinal evacuation, I was embarrassed and upset by my inability to better control the situation or participate in the cleanup.
There are no words to express my feelings for the 20 to 30 different nurses aides, male and female, who kept me clean and dry for the last three months. Asante Sana.
Needless to say, my stay at the hospital was a difficult adjustment. I rarely got any rest; there was a constant stream of medical staff coming to my room at all hours of the night and day to meddle in my medical business– drawing blood, checking my blood pressure and sugar levels, and giving me some kind of injection or another.
Most were competent, getting it right on the first try; more than a few were not so competent—rendering my right hand to a most painful but legal form of abuse. A drug regimen began and was now in full swing — Steroids to reduce brain swelling which caused blood sugar instability; Insulin to control the blood sugar instability: Keppra for the seizure activity; a blood transfusion was needed on several occasions.
Physical therapy would be needed to move again and a walker would be needed to preserve the strength of my hip which is weak and a fall could mean a hip fracture.
During this crisis my spirit was bolstered by midnight visits by my sons, Toure and Kojo. It was re-freshing to open my eyes at midnight to see Kojo reading over his lesson plans or Toure with Insomnia cookies in hand. My daughter Kweli took some time off from work and would read the New York Times so I could keep abreast of such issues as Obama’s battle with Congress, Hugo Chavez’s health –he has since passed– and updates on the Nets and Knicks.
I spent very little time alone as my wife was at the hospital day and night giving me solace and confidence to deal with all the machinations as we dealt with modern medicine in a big city hospital. We would often lament about how medicine today operates on a factory type model (systems with various pieces to carry out orders and assignments: many employees, doctors, doctor assistants, nurses, nurse aids, technicians, janitors, transporters, and so on) with some departments not knowing what the other is doing.
Over a period of six weeks, I could identify hundreds more jobs that could be available for people to work in a comprehensive medical center or hospital. I quickly learned that whatever I do, make sure I don’t need anything during the nursing/nursing aide “shift change.”
Before my brain surgery, I had visits from all my out-of-state children: Nandi Campbell, Louisiana; Makini Campbell, Florida; Taifa Graves, Georgia and Hazina Campbell-Dorius, Alabama.
Since then, they all keep coming in at various times to attend to my health and spiritual well-being. My sister Shirley Clarke came in from California and showered me with attention. I have weekly visits from my brother and his wife; Job and Muslimah Mashariki.
Visits from concerned nephews and nieces also serve as a source of comfort. Now that we have adjusted to this new reality, I am accepting visits from friends that help the days go by with meaning and pleasure.
Once my medical condition was stabilized, the medical team transferred me to the Baker Pavilion wing of the hospital where I would receive intensive physical therapy 2-4 hours a day, 5-6 days a week. This was the beginning of a long haul back to being my old self.
There was an extraordinary nurse, Jackie Thompson, who was so key to helping my wife and I cope with the new reality. Brother Logan Hazell was the rehab facility “strong man” — he picked me up four to five times a day, like I was a featherweight, to get me from wheelchair to bed and back again.
He was a super strong, kind, and gentle soft-spoken man whose patience and kindness will not be forgotten. The occupational and physical therapists Amy Meyer and Donna Dorensen, who unmercifully and unrelentlessly managed to get me out of bed and into a wheelchair and into the gym everyday helped me to regain some of the basic functions I lost after the surgery.
Meanwhile, I received a battery of tests: sonograms, x-rays, eye exams, and other specialty tests for eye, nose, and ears. My medical team advised that I start receiving radiation treatments in my brain to get rid of the residual cancer cells not captured by the surgery and begin an intravenous form of chemo once a week.
The Radiation treatments were an experience I struggled heavily with as it required the most discipline. I was prescribed 3 sessions of radiation treatment to my brain where the mass was removed and 3 more to another area where an earlier test discovered a small mass.
The procedure called for me to be fitted for a device that would allow the technicians to get radiation to a targeted area in my brain. I had to be strapped down with my head stationary while they zapped my brain. This process was done by a team under the supervision of Dr. Susan Pannullo, a brilliant radiation oncologist.
The Chemotherapy is to slow down the progression of the cancer in all areas of my body. While I have been told that I am holding up surprisingly well for a chemo patient, I have struggled at times. After my second week of chemotherapy I experienced fever and chills. It was discovered that this reaction was a result of a urinary tract infection (UTI), which was qualitatively the worse pain I had experienced since arriving at the hospital.
On the night of the 23rd, I awoke no less than 20 times crying in pain from the burning that accompanied my urination.The next day, because of my persistence, I was moved to a floor that specialized in infectious disease– fifth floor MASH unit. They employed a team of nurses to analyze and treat the problem. In order to cure the UTI I had to undergo a series of tests to identify the type of infection and proper treatment.
Here, I received more effective antibiotics. My UTI soon went away.This has been a difficult ordeal, fraught with lows and lower lows. I have been faced with difficult decisions regarding treatment options. I have had to confront head on the aftermath of brain surgery and the debilitation that follows.
Since my arrival in the hospital I have had to daily engage in a battle, a war, against cancer. It may have temporarily taken away my ability to stand and walk to the bathroom on my own, but it has not taken away my resolve to fight.
And each battle that I have faced, I have not faced alone. My family has been a constant source of support and companionship, giving me strength to face each battle head on. I have also been blessed with home-cooked meals from my daughter-in-law Debbie Campbell and my daughter Dr. Damali Campbell-Oparaji that greatly aided in my food consumption and kept me strong during the chemotherapy.
I am not cured, but I am feeling stronger. I don’t know how many days I have remaining in this life. I feel great and have no pains at the current moment.
I thank God. I thank my entire family, 8 children, 12 grand-children, my wife and friends and relatives for the support given to me in making this journey possible.
I am thankful for the many calls, letters of concern, words of encouragement and overall outpouring of love.
Editor’s Note: Jitu Weusi is a well-known Brooklyn-based educator and community human-rights-and-empowerment advocate and activist. He advocates for community control of schools and is a charter member of the National Black United Front. He’s a Jazz enthusiast and a volunteer chair of the Central Brooklyn Jazz Consortium.
This is one of the bravest articles I’ve ever read. Send any messages to Jitu Weusi via [email protected] or [email protected] and I will make sure to forward them. May Jitu, with the Creator, win the battle.
