When I was 26, I was diagnosed with adenocarcinoma of the small intestine. I had surgery to remove the tumor and then six months of chemotherapy. At five years out, I was considered a cure. It was my worst fear that I would be diagnosed with cancer again.
By age 33, I had gotten married and moved from Alabama to the Atlanta area. Just past my 33rd birthday, I had a relatively routine visit with my gynecologist. I complained of frequent, painful periods, so my gynecologist decided to do some lab tests to see if I was anemic. What she found was much more serious.
Two days after testing, my doctor called me with the results of my lab work. My neutrophil count was critically low. She told me she had made an appointment for me with Dr. Solh, a hematologist. Then she called me back and said Dr. Solh wanted me to come to Northside to the emergency room immediately to have my labs redrawn.
A short visit to the ER confirmed my worst fear: I had leukemia. Dr. Solh broke the news to me and my husband. To say we were devastated is an understatement. Despite being an Intensive Care nurse, I knew very little about leukemia. It was terrifying not only to have cancer again, but to have one that was so serious and one that I knew very little about.
Dr. Solh told us he would be admitting me to the Blood and Marrow Transplant Unit (BMTU) and that I would have a bone marrow biopsy the next day to determine the type. What I didn’t know was that I was being admitted to one of the best hospitals in the country for treatment.
I had my bone marrow biopsy the next day. The biopsy confirmed that I had Acute Myeloid Leukemia (AML). A bone marrow transplant was the recommended route of treatment, but first they needed to get my leukemia into remission with chemo. My biopsy was on a Friday and I began chemo on Sunday.
Dr. Solh explained that the chemo was to get my leukemia into remission, but ultimately, I would need a bone marrow transplant. Being an only child, I didn’t have siblings as possible matches. Each parent was only a 50% match, no one else in my family matched and neither did any of my friends. Dr. Solh and his team put my information into a worldwide database to begin searching for an unrelated donor. Within a month, I had not one but two 100% matches!!
In December, an infection put me in Northside’s intensive care unit. I quickly became septic. It was a terrifying, week long near death experience. Once again, the incredible Northside staff saved my life. Once I was out of ICU, my transplant was scheduled for January 21, 2016, just over three months from the date of my diagnosis. My family and I all thought my journey would be over after transplant. Little did we know, the journey was just beginning.
I spent the next two years fighting Graft Versus Host Disease (GVHD), an expected complication after transplant. GVHD happens when the donor cells begin attacking the new body systems because the donor cells see the body as foreign. Initially I had sores in my mouth, then intestinal GVHD, followed by skin GVHD and finally, musculoskeletal GVHD. I was hospitalized around 20 times with the intestinal GVHD and then battled the other forms as a patient at the BMTGA clinic.
Every step of my battle, from diagnosis to transplant to GVHD treatment, I was treated by Northside’s Blood and Marrow Transplant Group of Georgia. When I was hospitalized, I spent almost the entire time on the Blood and Marrow Transplant Unit. The only exception being the week I spent on a ventilator in ICU. I have no doubt that the amazing care I received is the only reason I am here as a survivor today.
The sheer number of people involved in treating a leukemia patient is unbelievable. I had doctors, nurses, techs, medical assistants, transplant coordinators, physical therapists, occupational therapists and more that treated me both in and out of the hospital. Each one remembered my name, my story, and my diagnosis. The care that I received was not only personal, but exceptional.
Today, I am just over three years from transplant. I am working again as a nurse. I play softball in a recreational league. I’m currently in training, along with two other leukemia survivors, to be a volunteer and host for bone marrow drives. My life has returned to ‘normal’ as much as it possibly can, but it’s a different normal. Every day that I wake up, I am grateful. And I know I owe a large part of that gratitude to all the amazing staff at the Blood and Marrow Transplant Group of Georgia, Northside Blood and Marrow Transplant Unit, and Northside ICU. I wouldn’t be here today if not for these incredible people.
Beth Wilson NSH Leukemia/BMT patient
While I was in the hospital for my induction treatment, my three siblings were tested to see if they would be a positive bone marrow match in the event I was able to have a bone marrow transplant. A transplant was the only real cure as a relapse was fairly certain given my prognosis. My younger brother qualified to be a donor for me, provided I got through the treatment ahead.
Following the chemotherapy treatment, the doctors were very positive with me after my disease started to disappear. I started to glimpse at the possibility that I may get to go home soon.
When they told me I could go home four weeks after I was admitted, I cried. I was still exhausted, but I started to feel like I might survive this experience. Although the chemotherapy treatments were very difficult, I was eager to finish this up and get straight to the transplant.
Recovery over the next year was a slow but steady climb back to health. I gradually had less and less need for transfusions, infusions of potassium and magnesium, and felt better and better. I walked with my brother in a Run for Leukemia six months after the transplant. Eventually, I was one year post transplant and felt about 90% of the way to normal. I don’t think I felt 100% myself physically for about 18-24 months.
Words of Wisdom
Doing laundry, making dinner for my children, watching them play, and being with my family was never as wonderful as it became after my diagnosis. I still look at the people I love and the sky outside and feel so incredible. I don’t know why I got to survive this deadly disease but I appreciate it completely. If you have to experience such difficult treatment, be sure to surround yourself with people you trust and keep yourself hopeful. The feeling of hope will keep your point of view positive and this is important to finding happiness during your experience.
It has been 17 years since I was diagnosed with AML and went through all the treatment. I can never fully thank all the nurses, doctors, hospital staff and family and friends who carried me through this experience. But I think of them all frequently still. The doctors were beyond brilliant. The nurses were engaged, intelligent, and phenomenal at stopping problems before they could happen. From the tech who checked my blood pressure machine in the middle of the night and told me she was praying for me, to the pharmacy tech who told me he said a prayer whenever he prepared the chemo for infusion. They all had a hand in my recovery and I think of them and the goodness that surrounded me.
Margaret Marcinkowski: NSH BMT/Leukemia Patient
“Thank you for the generous donation to the Leukemia & Lymphoma Society’s Team in Training!
When I’ve discussed the Society’s work with Dr. Holland, he has always said that they give back tremendously with their support for research and for patients and their caregivers.
The BMT clinic has given me years of life that I would not have had otherwise, as it does for so many people who sit in the comfy chairs every day of the week, except when we’re enjoying spa treatment in a bed on the BMT unit, or the ICU, at the hospital next door. We often chafe at the limitations imposed on us for our own good; we’re eager to get back to life as we once knew it! Without the staff of BMTGA, though, from Quanta at the front desk to the folks we never see in the back offices to all the nursing, midlevel, and physician staff, and the invisible cleaners who keep the clinic spotless and germ-free despite all the sickness we bring to the place – without all of you, we’d be lost.
Each year that I ride 100 miles with Team in Training I have in mind all my fellow patients, and everyone I’ve come in contact with at the clinic, and the knowledge that all of us treated at the clinic have been brought back from seeing the end of our lives looming right before us, keeps me going through the hard miles, the miles that build strength back and help return me and my fellow riders, many of them cancer survivors, back fully to life.
I can’t thank you enough.
“I wanted to write to thank you each and all for the superb treatment I received from you and the staff at the BMTG.
From the day of my admission on August 25 for AML, through the chemotherapy Clinical Trial of CPX-351, through four different hospitalizations in the BMTG, through all the clinic visits, you and your staff were caring and helpful.
The nurse-practitioners, the RNs, the technicians, the phlebotomists, the receptionists, the Case Managers were all terrific. Dr. Dale is a true asset. Having managed large organizations in my earlier career, I know something of the difficulty of recruiting and maintaining a highly professional and dedicated staff. You and your people truly set and maintain a high standard.
Following my discharge on February 8, I resumed care under Dr. Afshani at Georgia Cancer Specialists here in Rockdale County. I started the cycle of Dacogen on March 1. Thus far things are going well. My counts are down, and I am still weaker than I wish, but no other debilitating side effects such as fevers have occurred.
Again let me thank you all for your care. We truly appreciate the kindness and care for me and my family during this long, difficult illness.”
At 38 years old, She’ was teaching pre-school, working as a personal trainer, leading her daughters’ Girl Scout troops, and volunteering at their schools.
She spent her weekends running triathlons and half marathons in between time carved out for her daughters, and husband.
After a lifetime of pushing her body to extreme limits, she was prepared for almost anything. Except cancer.
During a routine appointment with her gynecologist, she was told her hemoglobin levels were unusually low. Her doctor thought the machine was broken. She was referred to a cancer specialist for further testing.
After months of tests and diagnoses, doctors told her she had myeloidysplasia.
“Every time they thought I had something, I’d go online, and it was always, ‘No cure. No cure. No cure,'” she said. “When I finally found out about the myelodysplasia, I found a society online and called. A lady there kind of casually told me that it would develop into leukemia within one year. I was shocked. Devastated.”
Doctors began testing her bone marrow each month for cancerous cells to monitor the leukemia’s development.
She began playing a waiting game and started thinking about interviewing other physicians. She went to Seattle and Dallas.
“The doctor in Seattle started crying when he met with me, she said. He said, ‘I feel so sorry for you. There’s probably no hope.’ He told me to go home and get treatment because if something did happen, my family couldn’t get to Seattle fast enough. I could be dead overnight.”
“The doctor in Dallas wanted to do only chemotherapy, but he said I probably wouldn’t recover fully. We didn’t like those options.”
When she returned to Atlanta, she decided to stop taking the bone marrow tests.
“Not long after that, I ran a half marathon and couldn’t finish,” she said. “I was sweating bullets and I thought, it’s time. I have it.”
She went to Dr. Lawrence Morris, from The Blood & Marrow Transplant Program at Northside Hospital. She had given birth to both her children at Northside Hospital. Dr. Morris confirmed she had full-blown acute myeloid leukemia.
“It’s the worst kind of leukemia you can have,” she said. “But the doctors at Northside didn’t make me feel like I had a death sentence. They were just wonderful. They told me I wasn’t a statistic. I was me, and I could beat the statistics. It was just what I needed.”
In 2001, She enrolled in the National Marrow Donor Program to find a match for a bone marrow transplant.
Before anything could be done, however, she had to start intensive chemotherapy in the Northside BMT unit. She insisted they wait until after Christmas.
“Christmas is when I told my children,” she said. “It was very, very hard, mainly because they couldn’t come in the unit. My immune system was so low that if I caught anything, I could die. I had to tell them Nana was going to come take care of them for a while. That was the hardest thing.”
Thirty days later, after several rounds of chemotherapy, the NMDP database found a bone marrow match. However, before they could schedule a transplant though, the donor disappeared.
“It was like she vanished off the face of the earth,” she said. “It was unbelievable.”
Doctors had already destroyed all of her bone marrow in preparation for the transplant. They had to continue with chemo until they could find another donor. She again was stuck in a “holding pattern.”
“During that time, the care at Northside was phenomenal,” she said. “I can’t tell you how good the nurses were. They became my family, and I became theirs. I saw nurses that would cry when someone passed away. It was painful. It was hard. I didn’t want to do anything, but I trusted them.”
The database finally found another a perfect match, a young Tennessee man. The operation was successful, and her blood levels immediately rebounded. Her emotions didn’t.
“Shortly after the transplant, I stopped talking. I went into myself and just stopped talking to my mother, who had come every day to see me. I don’t know what happened. I guess I just began to take things out on her,” she said. “That’s when I really saw how much the staff at Northside cared about me.”
Dr. Kent Holland talked with her by her bedside one afternoon. “He said, ” you’ve come this far. Tell me what’s wrong. You can’t do this to her. You’re torturing her,” she said. “That was what I needed.”
A few months after the transplant, she developed graft versus host disease (GVHD), which occurs when a donor’s cells start attacking the cells in the recipient’s body. She returned frustrated and disappointed, and was placed on several different medications including steroids and drugs to prevent her body from rejecting the bone marrow.
One hundred days post transplant, she thought she was doing very well. This however, was not the case. One of the most memorable times was when one of the nurses washed her hair. It was a simple task, but it meant so much to her.
Other things, like transporting her in a wheelchair to her daughter’s doctor’s appointment and helping her put on tights designed to improve her circulation set the staff apart from other hospitals.
“After that, I got hemolytic uremia and they had to put me through plasmapheresis to clean my blood,” she said. “It took four to five days for about four hours at a time. It made me so cold, and those nurses were constantly wrapping me in blankets and encouraging me.”
That encouragement, coupled with the love for her family, helped her survive.
“At a certain point, I was really sick. I knew I had a conscious decision to either live or die,” she said. “And I knew if I let go it would have been OK. But I wanted to fight. I couldn’t do it; I couldn’t die because of my kids. I just couldn’t let go. When it was all over with, my doctors told me I survived because of my grit and determination. They told me I was the reason I pulled through.”
After two months in the hospital fighting graft versus host and hemolytic uremia, she was ready to go home and be with her family.
“We had stopped telling the kids I was coming home because the date kept getting postponed. “Then one day, I surprised them by being there at the bus stop after school,” she said. “They just ran to me.”
As she approaches another anniversary after her transplant, she’s constantly is reflecting on why she survived.
She now works as a medical technician in the microbiology unit at Northside Hospital in Alpharetta. She occasionally talks to patients in the BMT unit and answers their questions about what to expect before and after a transplant.
“Cancer has really changed me. In a way, I feel reset,” she said. “I have different priorities now. Some people want to travel the world. For me, all the traveling I need to do is go to my living room and feel my children’s and my husband’s arms around me. That’s all the excitement I need.”
After struggling to walk up a staircase alongside an older, life-long smoker, he’ went to see his doctor about feeling tired and weak.
His doctor ordered blood tests. The next day he was playing in a golf tournament with his doctor, who also happens to be a friend, when he got the phone call with clear instructions: go immediately to a hospital.
“I thought they had it wrong, so I passed the phone off to my doctor. He just went white. So I knew I was in trouble.”
He and his doctor drove to Northside Hospital where their fears were confirmed: He had acute leukemia.
He was admitted to Northside’s Bone Marrow Transplant Unit. He would spend more than three months as an in-patient, undergoing chemotherapy and a bone marrow transplant (BMT).
“I was realistic, but not pessimistic,” he said, who knew that the odds were against him, but also felt assured being at Northside, the Southeast leader in transplant survival.
The chances of finding a bone marrow match are only about 1 in 4 among siblings; outside of siblings, matches are extremely rare.
His younger brother was a match.
Unfortunately, his younger brother was also facing health problems of his own. “He had been put in the hospital a week or so before I was hospitalized with congenital heart failure,” he remembers. “So it was a real issue getting him down from New Jersey.”
Meanwhile, his wife was facing the hard realities of their situation — this was going to be her last year of teaching before retirement. One of the doctors advised her to plan on retiring alone because he was not likely to survive his illness.
A social person, he benefited from the caring and supportive staff at Northside’s BMT Unit, who also let him have visitors.
“They would just throw on the hospital blue suits and come in to be with me. That is one of the special things about Northside. They understand the importance of the emotional side of a patient and not just the disease.”
However, as his treatment progressed, his contact with others became limited, spending time only with his wife, daughter and Northside’s nurses.
Several rounds of chemotherapy failed. He would need his brother’s help for a transplant.
Although it took two days, his brother donated enough stem cells.
On April 14, 2006 – Good Friday – he received his transplant. His doctors warned him, however, that the worst part would come a few days after the transplant if he developed graft versus host disease (GVHD), a common complication during transplants, in which bone marrow interprets organs as foreign bodies and attacks them.
Doctors placed him in intensive care as his body fought through the tough final stages of the transplant. On May 15, he was released from Northside. However, because he lived more than 50 miles away, his doctors wanted him to be closer to the hospital. Northside made arrangements for him and his wife to stay nearby for daily treatments at the BMT Clinic.
He has since been cancer free and is enjoying life with his wife and his daughter. He is now a proud grandfather.