4th Angel Stories
I was diagnosed with Myleodysplastic Syndrome (“MDS”) in June of 2006. While my blood tests and bone marrow biopsies showed signs of the disease, my general health did not. In September of 2006, I went to the Cleveland Clinic, and met with Dr. Maciejewski - who gave me the knowledge and comfort of knowing that I was in the best place with the best doctors. Dr. “M” and I agreed that CCF would monitor my condition, with the agreement that if/when time came for treatment, I would be ready. In late 2008, I began to feel what the lab work was showing. In February 2009, I received my first blood transfusion and then became transfusion dependant. As the disease was now progressing, my only option was a bone marrow transplant. Lucky and blessed, my brother, Walter, was a perfect match donor. I entered CCF on July 13, 2009 and began six days of intensive chemotherapy. On July 21, 2009 I received my bone marrow transplant. I spent the next 12 months in recovery.
Released from the hospital on August 7th, I lived locally with my husband, Andrew, for 3 months while I was receiving outpatient treatment. I was allowed to go home to Michigan on October 30th, and soon after began to steadily lose weight. Something was just ‘not right’.
I had weekly follow-up visits at the Clinic, and in late November 2009 my doctors told me that my transplant was failing and that I would need a re-transplant as soon as possible. This would mean more chemo, another month in the hospital and, the ‘unknowns’ and potential side effects. It was difficult to say the least to hear this news. Two days after Christmas, I woke up with a fever and rapid heartbeat. Andrew took me to ER at University of Michigan. I was put on IV antibiotics immediately. After numerous tests, I was told I had infectious pneumonia and septi-sys (a ‘septic’ system). My blood pressure dropped to 55/50 and I was put on oxygen. Two days later another x-ray revealed that I had fluid around my heart. I had surgery - without anesthesia because my blood pressure was so low – to drain the fluid. Two more days in cardiac ICU, with Andrew at my side and many prayers being said for me.
Then – well, a miracle happened. Daily blood tests revealed that I did not have any myleoblasts in my blood. Doctors could not explain this. After 9 days at U of M I was transferred by ambulance to the Cleveland Clinic. I continued to receive IV antibiotics and oxygen, and day after day my blood work improved. I improved quickly and was released on my birthday on January 8th to come home. Several days later, I got a bad skin rash all over my body. I went back to the Clinic for a biopsy of my skin – Graft v Host disease was confirmed. Another bone marrow biopsy was scheduled. I received the results at the end of January: I was going into remission! The doctors monitored me closely for several weeks and then it was decided I did not need to be re-transplanted. Slowly I began to eat, gain weight and regain strength. In April I went to visit my mom – I had not seen her for a year – and had the best Easter ever. I also began to reconnect with friends, read, write, and drive. I have been doing well ever since. I tell everyone that my experience was not “a one-woman transplant”. I had my amazing husband, my brother my donor, my sister who helped care for us, the love and prayers of family and friends, excellent doctors and nurses, and most importantly the blessings of God.
Now – it was my turn, my responsibility to help others suffering from blood cancers. I knew all too well what that experience was like and I was and am committed to helping others. I contacted the director of the 4th Angel Program at CCF in June 2010 and singed up to be a mentor. Since then, I’ve spoken to five people who were diagnosed with MDS and like me, had transplants. I want them to know that they are not alone and that as long as they need me I’ll be there for them. Being a 4th Angel mentor give me perspective on the past, and I pray it gives hope to others for their futures.
Intelligent, analytical, precise. As an electrical engineer for Molex, a global interconnectivity products company based in the Chicago area, Don T.applied these qualities at his job every day. After hours, Don applied his energies and talents to his home improvement projects and furniture-making hobby. “I was very busy all my life,” he says. “I would come home from work, have dinner, change clothes and get to work on my latest project.”
Over the years, he completely remodeled the Chicago home he shared with his wife Kathleen and four kids and crafted tables, clocks, desks, turned bowls, candle holders and wine cups in his home workshop. Since retiring in 2002, Don is even busier, adding photography, investments, exercise, yoga, a ministry to shut-ins, Bear Necessities (a foundation that helps terminally ill children) and health and wellness research to his interests.
Meeting and talking to Don, a lively 70 year-old with the energy of a man 20 years his junior, it’s apparent that health and wellness is more than a casual interest for him. What isn’t apparent - unless he chooses to tell you - is what prompted his interest in the subject. Don has kidney cancer, diagnosed in 1999 in one kidney and since metastasized to his lungs and ribs.
The kidney was removed in 1999, but two years later small tumors started developing on his lungs and ribs. At the time, “they gave me 18 months to live, but my wife and I wouldn’t accept this,” he says.
After a career spent creating complex connectivity solutions for industry, Don is a man who likes to have a plan and a strategy. He attacked the cancer issue like he would an engineering challenge – reading, researching and developing alternative solutions. He sought out information about the newest drug treatments as they were being developed, including where clinical trials of new treatments were underway and what types of patients they were accepting.
As a result, Don began supplementing his medical treatment with complementary therapies such as meditation, increased physical exercise, positive thinking, prayer and herbals and vitamins, under the supervision of a naturopathic physician at a major cancer hospital and the approval of his oncologist. He connected with other cancer survivors online and through the Chicago area Kidney Cancer Association.
When Don takes on a project, he attacks it with all of his considerable energy, and within a short time he had amassed an extensive library of information on kidney cancer and developed a far-flung network of cancer survivors. He believes that all of this, either directly or indirectly, has contributed to his longevity in the face of dire odds. “I know what’s coming down the pike as far as new treatments,” he explains.
Nonetheless, Don had little success with drugs that were supposed to prevent spread of his cancer, including drug trials he participated in at the University of Chicago Medical Center. Within a few years of his original diagnosis, he developed a tumor on his spine that had to be removed, followed by a brain metastasis.
“The brain met was a bad one,” he says with typical understatement. The tumor caused seizures, then paralysis, landing him back at the University of Chicago Medical Center for an operation to remove it. Following the surgery, Don remained paralyzed, unable to walk or write – a tough blow for a man who thrived on physical and mental exercise.
Transferred to a rehabilitation center, Don told the therapists, “You can work me as hard as you want.” Through hard work, excellent therapists and sheer force of will, he slowly but steadily recovered his writing and walking abilities.
Today, he rates his writing as “100 percent” and his walking at “98 to 100 percent.” Always ready to face a challenge head on and figure out a way to overcome it, Don added ankle and leg exercises to his daily regimen to combat the slight weakness that persists on one side of his body.
During the long Chicago winters, that daily workout includes a stair stepper or a treadmill, but as soon as spring arrives Don and his wife hit the walking and biking trails. “Before I had cancer, I was always ahead of her,” he quips, “Now I’m trying to keep up with her.”
Since 2006 Don has been taking Sutent, a newly approved chemotherapy drug that he calls “the best thing that’s happened to kidney cancer.” Since he started on the drug, his cancer has stabilized.
Despite his busy schedule, Don has taken time to think about his diagnosis and his life, which he now views as divided into two stages – before and after cancer. “It [cancer] changed everything,” he says, “my priorities, my outlook, my appreciation of my family. My wife, children and grandchildren are a daily reminder of just how beautiful life is and worth fighting for.”
He’s still a busy man with a broad range of hobbies and interests, but these days he channels a lot of his energy into helping other people with cancer, often chatting online with them. It was online that he learned of The 4th Angel Mentoring Program. “I realized I could do this, so I signed up,” he says. To his ordered mind, it was the logical thing to do.
Don takes his 4th Angel responsibilities seriously, part of what he says is a “self-imposed mandate to help as many people as I can.” Of the myriad of activities that he enjoys, mentoring cancer patients is the one that gives him the greatest pleasure and personal satisfaction.
“God, my family and helping others are my primary focus - my hobbies are a distant second. Helping cancer people is one of the most rewarding things that I do. No hobby can compare to that,” he says. “I understand their fears and apprehensions, what’s it’s like to be making life and death decisions.”
Mentoring other cancer survivors through The 4th Angel Mentoring Program and online is far removed from designing electrical circuits and connectors and dealing with hardwiring and boards. It is simply, Don says, “a labor of love. My wife sometimes thinks I’m overworking myself,” he adds. “But this is my chance.”