Ed chronicles part II of his chronic lymphocytic leukemia (CLL) story from the third person.
Edward D. McClain retired from the U. S. Department of Commerce in 1995 and has been living in Rehoboth Beach, Delaware, since 1996. Ed likes to work for his church, hunt, fish and collect rare firearms. He enjoys professional football, cooking shows and action TV shows/films but will not watch game shows nor talk shows. Ed is a two-time survivor of CLL, by the Grace of God.
Ed has been scheduled for six five-day chemo cycles spread over the next six months.
Tunnell Cancer Center in Rehoboth Beach rose three stories above the coastal landscape as it sprawled over six or seven acres along with the rest of Beebe Medical Campus. It has become a beacon of hope to many cancer patients and survivors.
The Robert & Eolyne Tunnell Cancer Center at Beebe Healthcare's mission includes; “To Provide Both Hope and Cure
Mary, the receptionist came to be the first face of hope for Ed when he arrived for his first chemo treatment. She had his utmost respect and admiration as so many, many more would over the next several months.
Ed had accepted his diagnosis and was prepared spiritually to begin treatment for his CLL. The cancer center had become a visual source of hope. Not in the beginning, though, when he was first diagnosed, but gradually as he accepted the necessity for treatment. Tunnell became a “whisper of hope,” a whisper that would become a blessing over the course of several months of chemotherapy. Hope springs eternal within the human breast and here was a symbolic edifice of hope, yes, “whispering hope.”
Whispering hope, oh, how welcome thy voice.*
Mary checked Ed in and took him over to the administrative clerk to complete the necessary paper work. This would become a monthly routine. Once completed, he returned to the waiting area and rejoined Pattie. She touched his shoulder and they clasped hands, chatting nervously as they waited to be called and escorted to the infusion room. Reading a magazine was not something that calmed their nervousness. However, there was a medium-sized table set up off to one side of the waiting area and upon the table was a very large unfinished puzzle.
Pattie said, "Come, do you want to work on that puzzle?"
Ed agreed and they settled in working on different parts of the puzzle.
Before the beginning of treatment, Ed and Pattie accepted an invitation to attend “What Color is your Ribbon?” — an introductory educational assembly for newly diagnosed cancer patients. It was held in the large meeting room of the cancer center on a Wednesday. Ed was to begin treatment the following Monday. The attendance was approximately 40 people — patients and their caregivers included. It was a good event providing positive reinforcement. Many were, in Ed’s opinion, worse off than he was. His compassion for them was great.Ed and Patty came away with a better understanding of the progression of treatment for cancer patients and a “guide” (sic) book. The handout was in a canvas bag, making it easy to carry around. Ed would bring it with him throughout the entire course of his treatment. It included short booklets on various topics pertaining to chemotherapy of the many cancers being treated at Tunnell. It also could be used as a log book and provided dividers and tables for recording medications, appointments and test results. Ed still maintains his today.
Following the assembly, Ed’s thoughts turned to next Monday when his chemotherapy would begin. A subconscious feeling stirred deep inside him — a feeling he may have felt other times in his life but did not remember.
The work on the puzzle absorbed their attention and the clinical nurse called Ed’s name a second time before he responded. They touched one another as the nurse smiled broadly as she introduced herself, she would become known to Pattie and Ed as 'Nurse Nancy.'
“You are here for your first infusion, right?”
Ed spoke softly as he nodded his head and said “yes.”
“Good, follow me.”
They passed through the welcoming portal to the middle of a long corridor. Turning left, away from the location of the wig shop display, they proceeded to the very next corridor on their right. As they passed the next room, Ed recognized it as where they had drawn his blood the week before. He touched the large protruding lump on his neck below his right ear which made him think of Frankenstein. Further down the corridor, they could see a vast open area full of sunlight. They paused at the entrance of this large open area to take Ed’s weight. He had now lost 50 pounds since last spring.
"OK, now follow me to area 3," Nurse Nancy said.
Looking up, Ed could see a beautiful open space divided by three half walls, thereby creating four large cubicles with a solitary cubical near the side exit door. Each cubical had what Ed came to describe as four “industrial strength La-Z-Boys,” but the cubical by the side exit door only had room for two patient positions. Cubical 3 had one patient and the nurse indicated he could have the choice of any unoccupied chair. Ed choose one next to the patient already there, out of respect for her privacy. They would be separated by 10 or 12 feet and privacy curtains hung from the ceiling, which could close off an entire patient on four sides. Each patient position included a mobile device for hanging infusion bags as they dripped through a pump/monitor before the patient’s vein was entered. It wouldn’t take Ed long to name them “Christmas Trees.”
As Ed settled in to the La-Z-Boy, he looked for a place Pattie could sit and be near him. Each patient location also had a comfortable arm chair for the individual caregivers to use. There was also a trash can for the convenience of nurses/patients/caregivers. The half wall contained ample electrical outlets for medical equipment and charging of cell phones and laptop computers. The floor appeared to be highly polished maple-colored hardwood and all exposed woodwork was of the same wood and color. The walls within the space were an off-white complemented by the matching color of the leather La-Z-Boys. This was accented by the curtains over the immense windows rising from halfway up the wall and all the way to the ceiling and gave excellent views on two sides of the full space. The window treatments were of white sheers and blinds easily adjusted to keep direct sunlight off the patients. The nursing station was compressed in the space between the first corridor and one that ran parallel to it. Restrooms for patients and caregivers were located in each corridor. The second corridor also contained the infusion pharmacy.
To the right side of the infusion room were two medically equipped bedrooms for the most severe cases, an exam/procedure room and a small open pullman kitchen. The kitchen contained ample counter space, storage cabinets, microwave ovens and refrigeration units.Looking through the windows, one could see a seasonal floral garden boxed in by a high outside wall giving the utmost privacy to all patients. The garden contained a gazebo and a pergola. It was very lovely, peaceful and calming as it attracted a wide verity of song birds.
The nurse ask for a list of medications, which Ed had printed out and brought with him. She began to take Ed’s blood pressure/temperature/pulse. The BP was borderline high under the circumstances.
The unremembered emotion, that feeling he may have felt other times in his life but could not remember, came back much stronger than before.
The nurse prepared Ed’s arm for the injection site and suggested he consider having a port installed somewhere between one shoulder and collar bone. Ed cringed at the thought and mentally rejected it, refusing to think he was that bad off.
The infusion needles were much larger than anything he had ever been injected with. The nurse had prepared the first drip bag of saline solution and a smaller bag containing steroids to reduce the swollen lymph nodes in his body and the enlarged spleen. Then she gave him two acetaminophen tablets to reduce swelling around the injection site. Soon the cancer fighting cocktail would be made up by the pharmacy and the pump/monitor was set for a very slow titration in order to control the impact to Ed’s body of these strange new chemicals.
When the cocktail arrived, it was immediately hung on the "Christmas tree," but not until the nurse donned a hazardous material gown and gloves. Ed wondered where was his Hazmat suit? The nurse explained the procedures they were compelled to follow for the safety of all the patients and caregivers.
A volunteer brought a warmed blanket and laid it over Ed. He really did not want it but thought it was such a magnanimous gesture, he tolerated it for a half hour before casting it off. Ed noticed many other patients willing accepted the warm blankets but it was not currently a need for him.
Ed’s cocktail was composed of two drugs: Rituxan (rituximab) followed by fludarabine. This combination was used to destroy the numerous defective white cells so Ed’s body could regenerate new healthy white cells. Filgrastim would be administered after more than 24 hours following the completion of a five-day cycle of chemotherapy.
Ed sat back in the recliner and tried to relax but due to the quantity of fluids being pumped into his body, he kept needing to get up and go to the restroom. He became quite skilled at guiding the “Christmas tree” down the hallway without disturbing the cocktail drip.
Again that strange emotion overcame him even stronger than before.
Ed puzzled, “What is that? It is continuing to plague me.”
After a tedious 8 1/2 hours, Ed’s first day was complete and the nurse removed the IV, but not before asking him if he wanted to leave it in for the next four days. Ed declined with the concern of knocking it loose while trying to sleep. The nurse complied with his wishes.
It had been a very long day but the first day of chemo was complete. Day 2 would not take as long since Ed had tolerated the drug infusion very well and the rate of titration would be increased slightly tomorrow.
As Ed and Pattie walked back through the cancer center, Ed began to feel a sense of accomplishment and that unrecognizable emotion overwhelmed him.
But what was it? It was more elating than annoying. He just could not place ... wait! It is hope
. Hope existed. Hope was there. He really could overcome and win over cancer. As Pattie drove them home, they were both grateful for the blessings God was continuing to give them.
The lines from a hymn ran thru Ed’s mind;
*Soft as the voice of an angel
Breathing a lesson unheard
Hope with a gentle persuasion
Whispers her comforting word
Wait till the darkness is over
Wait till the tempest is done
Hope for the sunshine tomorrow
After the shower is gone
Whispering hope, oh, how welcome thy voice
Making my heart in its sorrow rejoice
We will see more of the trials and tribulations Ed and Pattie will face over the next six months.
Therefore my heart is glad, and my glory rejoices;
My flesh also will rest in hope.
***This hope is to me the very anchor of Christianity – and in fact that is what I read in Hebrews 6:19 — that it is the very anchor of the soul in times of trouble; most especially at the death of a loved one ...
*Adapted from the Hymn “Whispering Hope,” written in 1868 by Septimus Winner. Alice Hawthorne is often listed in spiritual song books as the author, this is just one of several pseudonyms used by Winner. He composed the words and music.
**Excerpted from the mission statement of Tunnel Cancer Center.
*** A. True Ott, PhD, excerpted from a from a tribute to his father, who was “a wounded Korean War veteran (that) died from liver cancer in 1997 most likely contracted from hepatitis-C from blood transfusions received by my father on a hospital ship.”