"My advice to others is share this ordeal with family and friends. They really do care. Do not hesitate to tell people about your diagnosis and treatment. Do not try to go it alone. It is too hard."
I was diagnosed with acute myeloid leukemia (AML) in December 2010. I had no symptoms. Neutropenia was found on a CBC taken during a routine annual physical exam by my internist. She referred me to an oncologist. A bone marrow biopsy was equivocal and I was referred to MD Anderson Cancer Center. During the next month the doctors at MD Anderson pursued my diagnosis until it became obvious that I was developing AML. Dr. Koller was extremely helpful as we went through the diagnostic process. By the end of December 2010 I was admitted for chemotherapy to put me in remission in preparation for a matched-unrelated-donor transplant. I received my transplant in April 2011.
Since my diagnosis was in some doubt for a while, I discussed possible differential diagnoses with my two sons and wife at some length. This made it easier to worry together. My brother and I decided not to tell our 95-year-old mother. Even though she could have understood the problem, her short-term memory deficits would have made it impossible for her to keep up with what was going on. In fact our mom died in September 2011, never knowing that I had a diagnosis of acute myeloid leukemia and that I had a bone marrow transplant.
After my diagnosis was established, I told my co-workers so that they could take me off the schedule. There was an outpouring of support from my colleagues and co-workers that helped me cope during the difficult days of induction and transplant. This was very important to me and to my wife.
My life was put on hold for most of 2011 as I slowly recovered. My friends, professional associates and most of all my family continue to help me in numerous ways. I did not realize how important this was. Now that I am improving they have not forgotten and continue to check in with me. My advice to others is share this ordeal with family and friends. They really do care. Do not hesitate to tell people about your diagnosis and treatment. Do not try to go it alone. It is too hard.
Early on, I was told how important it is to have a caretaker 24 x 7. I am very fortunate that my wife has always been there for me. A caretaker has to have this kind of devotion to make it. Several times I told our sons to call their mom to make sure she was actually withstanding all the problems I had and her role as my caretaker. She recalls now that what kept her going was not only the connections with family, friends and co-workers but a concentration on the daily tasks and daily activities. Planning for the future was definitely off the list. My advice is to have people that can care for the caretaker! They need support and encouragement as much as possible.
Try to learn to be positive and upbeat. Positive thinking definitely helps. The nurses in the clinics and on the hospital wards are very knowledgeable and encouraging. Ask them anything. They are also a source of understanding and comfort. They know how to handle things. It has been and continues to be very reassuring to know that the doctors and nurses at MD Anderson do nothing but cancer diagnosis and treatment and research. They go the extra mile to reassure, support and take care of you. As an inpatient take advantage of music therapy and physical therapy too. There is a program for inpatients that promotes walking around on the wards when you are hospitalized. Some days the idea of walking seemed overwhelming but I have learned that it is important for recovery. Ask to see the dieticians. Food is a major challenge during chemo and they have suggestions to help you eat.
For over a year my world at MD Anderson has switched to the outpatient clinics. Even though the waiting rooms are usually full the staff manages things very well. The staff’s level of concern and support continues on the outpatient side – it is an amazing team.
Best of luck!
Charley Friedman, AML and BMT patient
MD Anderson Resources
- Leukemia Department
- Leukemia clinical trials
- Clinical Research Center for Myeloproliferative Neoplasia
- Leukemia SPORE