Ed chronicles 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 waited patiently in the exam room. The nurse weighed him, taken his blood pressure and measured his pulse. The doctor would be in soon.
Kathryn Grinnen cautiously knocked on the door and greeted Ed as she entered. Ed complimented the pictures of her children.
Dr. Grinnen began with, “Your A1C remains below 6 at 5.4, your CBC shows very good levels of LDL, HDL and triglycerides. However, your white cell count is elevated.”
"It is elevated higher than four months ago and much higher than one year ago."
“What level is it?” inquired Ed.
“17,000,” replied Dr. Grinnen.
"We would like to see it below 12,000, preferably below 10,000."
“Oh, what can we do about it?”
Ed was not alarmed — after all, since he had become a patient of Grinnen, she had rescued him from hypertension and the once chronic nail biter now sported very attractive masculine finger nails. Grinnen also detected the high levels of his A1C and prescribed a program that Ed had readily accepted as a type 2 diabetic. In so doing, he altered his diet, began to lose weight and lowered his A1C to very safe levels and kept it there. He just knew the elevated white cell count would not be a problem for "Super Doc."
Grinnen placed her hand tenderly on Ed’s knee as she spoke softly, “It is a sign of infection but you have no fever. It also is an indicator of leukemia.”
“How do we determine what it is?” Ed asked, with a small amount of apprehension in his voice.
“I will make a referral to an oncologist at the Tunnel Cancer Center in Rehoboth Beach, and they will schedule an appointment for you. Take care. If this is what I think it is, we are on it at a good time. I want to see you again within one week after you see the oncologist, so call my office and make an appointment when you know your scheduled visit with him.”
As Ed drove home from his visit, his mind began to wander around the possibilities of having leukemia. Would treatment be successful? If not what then? Is this going to be the end of my life? Will I suffer? What will become of Pattie, our home, children, grandchildren? She is strong and self-reliant but what more could I have done to care for her after I am gone? To what expense will this be to our relationship and our finances? Will my hair fall out? Am I going to waste away to become frail and dependent on others for my personal care? My future and Pattie's is in God's hands. I must have faith in God. Stop these thoughts, they're making me paranoid. I have always been strong in the face of adversity. Please, God, don't take that away from me. Hold me up. Please, strengthen my faith in you and if I do have cancer, please grant me remission.
Later that day, Ed told his wife Pattie about his visit with his doctor.
She spoke in a very concerned tone, “We are going to get this checked out and God will be with us.”
Ed tried to speak but Pattie continued, “I am coming with you so I can hear what the doctor has to say — you don’t always tell me or you might forget some details. We will not give up hope."
Ten days later, at the Tunnel Cancer Center, a blood draw was made and just minutes later, the oncologist (Nouman Asif) had the results as he spoke with Ed and Pattie.
“The blood draw shows your white cell count is elevated and I want some more tests. I can feel enlarged lymph nodes in your neck and abdomen. We will schedule a CT scan of your torso, neck and shoulders. I think I feel enlarged lymph nodes in your arm pits. Also, I am sending a blood sample to the Mayo Clinic for analysis.”
“What is the white cell count now?" asked Ed.
“Wow!” Ed exclaimed nervously, “That has jumped by 10,000 just since last week.”
The anxieties now were growing large for Ed and Pattie. Anticipation of the unknown was growing. The unexpected was happening. Can't Superman, as Pattie would sometimes call Ed, live forever?
Within five days, Ed went for the CT scan. He was trying to be light-hearted about the need for the CT scan and when given a berry-flavored barium smoothie he asked for a chocolate-flavored one instead. The imaging staff just chuckled at him saying, "It doesn’t come in chocolate and you must drink all of it in 15 minutes, then wait for 45 minutes before the CT scan.”
Pattie looked at him with amusement as Ed began choking the barium smoothie down. He jokingly offered to share it with the other patients in the waiting room but found no takers. Soon, Ed finished the concoction and asked the staff if he could have another. Pattie just continued to chuckle at him.
Forty five minutes later, the imaging technicians called Ed back for the CT scan and hooked him up for intravenous injection of contrasting dye. Pattie could not come in with him because of her pacemaker and waited patiently in the hallway. Test pictures were taken then the dye was injected and the final pictures (scans) were completed.
After enough stress, Ed and Pattie had scheduled a three-day weekend and were now looking forward to getting away. Before they could get the car loaded, Ed received a phone call from Grinnen.
“I see you had a CT scan this morning with contrasting dye. Did they tell you not to take your metformin for three days prior to the CT scan?”
"No, only one day before and on day after," Ed said.
“I want you to go back to the Beebe Medical Campus for a blood draw so I can check for liver damage," ordered Grinnen. “I will call ahead and authorize it. They will send me the results immediately.”
Ed tried to explain that they were on their way out of town.
“I will call you on your cell phone with the results and a plan if necessary,” Grinnen replied. “You may need to cancel your trip, turn around and come back."
"OK," Ed replied with a little bit of downer tone in his voice.
Two hours later, Grinnen called.
“I have the results and everything is clear, she said. "You are in good shape. Enjoy your trip and remember next time: No metformin for three days prior to a contrast dye injection.”
"Oh, thank you and God bless you, Dr. Grinnen."
Ed and Pattie continued their short trip for a much needed getaway.
One week later, a very wary Ed and Pattie, full of anticipation of the unknown, were back in to see Nouman Asif for another blood draw and the results from the CT scan.
He came into the exam room and was very cordial as he began to examine the lymph nodes under Ed’s armpits, abdomen and neck.
Very calm and softly, he began to interpret the test results for a very anxious Ed and Pattie.
“The CT scan reveals your lymph nodes are very much enlarged and the one on your neck has grown much bigger. Your spleen is also enlarged. The blood draw now shows your white cell count has risen to 73,000 and the results of the blood sample sent to the Mayo Clinic confirm my suspicions,” he concluded.
Drawing a deep breath, he announced: “You have stage 3 chronic lymphocytic leukemia, CLL for short. You have lost weight, 30 pounds since I first saw you five weeks ago.”
“Yes,” Ed replied, “I have been trying to reduce my weight to help control my diabetes.”
“Weight loss is indicative of the disease,” said Asif.
Pattie was devastated and went into stoic self-control, staring past Ed and focused on the wall. She admitted later that she was about to burst into tears but drew strength from the brave front put on by Ed. That is the way they play off of each other and they will need that ability for the future.
Stunned momentarily from the shocking revelation he just recieved, Ed grabbed self-control and began to ask what he hoped were intelligent questions as he felt the enlarged lymph node below his right ear.
"Will it subside and withdraw?”
"Is there any chance it will go into remission?”
"No, not without treatment.”
"How do we treat it? Is the treatment always successful? Is there hope for me? Is my life span compromised?"
“Now slow down," responded Asif.
“We must start chemo therapy quickly. CLL responds very well to established treatment protocols. We may control the CLL but it can come back. If so, we will treat it again. Yes, there is always hope and advances in treating blood cancer sare coming faster and faster. We are making great gains against this cancer. I will make up a schedule of your necessary treatment and we will begin next Monday. In the interim, you must call me immediately if your body temperature rises above 99.9. While your body is producing lots of white cells, they are no good and consequently, your immune system is not capable of protecting you from infection. We must first kill of these weak white cells and coax your bone marrow to produce more good white cells. Until we have this established, you are vulnerable to infections which will run rampant through your body. If your temperature rises above this level we will isolate you in the hospital and pump large quantities of antibiotics into your body to try and counter act the infections. This is the danger of CLL. So, avoid all possible sources of infection, wear a surgical mask if someone in your family comes down with a cold or flu. Avoid going out in public unless absolutely necessary. And above all, get your annual flu shot right away as well as pneumonia and shingles vaccine.”
“One more thing,” Ed said. “This brings back a very old concern I have worried over time and time again. I participated in an underground nuclear detonation 45 years ago at the nuclear testing grounds in Mercury, Nevada. I was there for a full month and toured many previous above ground sites, some of which may have still been a little hot radioactively. Could this be a cause of my CLL?”
Asif replied, “After such a length of time, it is not possible for me to make a connection between that and CLL.”
“My nurse assistant will contact you with details of your chemo routine with time and dates. She will also give you the time of our next appointment which will be coupled with a blood draw after your first week of chemo. Now take care of yourself and call me if anything unusual begins to occur.”
As Ed and Pattie walked down the long corridor towards the waiting room and exit, they passed the display window of the wig store. Ed cringed at the thought of someone or himself losing most or all of their hair and wanting a wig to hide their infirmity or restore their self confidence. He thought going bald is not such a bad thing for a man but a woman has glory in the hair that covers here head.
"Judge for yourselves: is it proper for a woman pray to God uncovered?
Does not even nature of things teach you, that if a man has long hair, it is a disgrace to him?
But if a woman has long hair, it is her glory? For long hair is given her as a covering."
1 Corinthians 11:13-15
All though Ed would walk down this hallway many, many times over the next several years, he could not — and would not — look in that display window again. he sympathy for other cancer patients would almost overwhelm him.
We will see soon how Ed and Pattie adjust to treatment.