My acute myeloid leukemia (AML) was officially cured three years ago. So, when my oncologist recently told me that I had a chronic illness, needless to say I was taken aback.
I had a similar reaction when I got an email inviting me to join a chat group “for those living with acute myeloid leukemia” and learned that it was “for patients” who were both in and out of treatment.
How I got here
Leukemia caught up with me when I was an otherwise healthy 48-year-old. A divorced mother of three school-aged children living in western Massachusetts, I was a newspaper reporter as well as an avid runner and tennis player.
When running the Saint Patrick’s Road Race in Holyoke, Massachusetts in 2003, I felt unusually tired. But I finished anyway. I went to my doctor a few days later, and the blood tests and bone marrow biopsy showed that I had AML.
I received treated for the aggressive blood cancer four times between 2003 and 2009. I got three rounds of chemotherapy at Dana-Farber/Brigham and Women’s Cancer Center in Boston. And after that came a stem cell transplant. There are two main types of transplants, and I got both of them: autologous (where stem cells come from you) and allogenic (where stem cells come from a donor).
After two relapses and a graft failure, my doctor offered an unusual fourth transplant with stronger chemotherapy and a new donor. I received healthy stem cells on January 31, 2009. After a year of isolation — to limit my exposure to germs, which I did after each transplant — I started a new phase in my life … living with chronic symptoms.
Finding the right label
While the aftereffects will last for the rest of my life, I don’t consider myself to be “ill” or to be “living with AML,” because I don’t have it any more.
Some survivors are labeled as “living with chronic disease,” and others have suggested “living with chronic symptoms.” That label sounds like a better fit for me, but whatever the wording, survivors like myself can feel like they’re always dealing with something.
What I’ve faced since being cured
1. Peripheral neuropathy
The chemotherapy caused nerve damage in my feet, resulting in numbness or a tingling, sharp pain, depending on the day. It also affected my balance. It’s unlikely to go away.
2. Dental issues
Due to dry mouth during chemotherapy, and the long periods when I had a weak immune system, bacteria got into my teeth. This caused them to weaken and decay. One toothache was so bad that all I could do was lay on the couch and cry. After a failed root canal, I had the tooth extracted. It was one of 12 that I lost.
3. Tongue cancer
Luckily, a dental surgeon discovered it when it was small during one of the tooth extractions. I got a new doctor — a head and neck oncologist — who removed a little scoop out of the left side of my tongue. It was in a sensitive and slow-healing spot and extremely painful for about three weeks.
4. Graft-versus-host disease
GVHD occurs when the donor's cells mistakenly attack the patient's organs. They can attack the skin, digestive system, liver, lungs, connective tissues, and eyes. In my case, it impacted the gut, liver, and skin.
GVHD of the gut was a factor in collagenous colitis, an inflammation of the colon. This meant more than three miserable weeks of diarrhea. GVHD of the liver led to high liver enzymes that have the potential to damage this vital organ. GVHD of the skin made my hands swell and caused my skin to harden, limiting flexibility. Few places offer the treatment that slowly softens your skin: extracorporeal photopheresis, or ECP.
I drive or get a ride 90 miles to the Kraft Family Blood Donor Center at Dana-Farber in Boston. I lie still for three hours while a large needle draws blood out of my arm. A machine separates the misbehaving white cells. They are then treated with a photosynthesizing agent, exposed to UV light, and returned with their DNA altered to calm them down.
I go every other week, down from twice a week when this came on in May 2015. The nurses help pass the time, but sometimes I can’t help but cry when the needle hits a nerve.
5. Prednisone side effects
This steroid tamps down the GVHD by reducing inflammation. But it also has side effects. The 40-mg dose I had to take daily eight years ago made my face puff up and also weakened my muscles. My legs were so rubbery that I swayed when walking. One day while walking my dog, I fell over backwards, earning one of many trips to the emergency room.
Physical therapy and a slowly decreasing dose — now just 1 mg per day — has helped me get stronger. But prednisone weakens the immune system and is a factor in the many squamous cell cancers of the skin I’ve gotten. I’ve had them removed from my forehead, tear duct, cheek, wrist, nose, hand, calf, and more. Sometimes it feels that just as one has healed, another flaky or raised spot signals another.
6. General wear and tear
Combined with checkups with my transplant doctor or nurse practitioner every 6 to 8 weeks, I have to see so many specialists that I sometimes feel like taking care of my symptoms is a part-time job.
Since I’m grateful to be alive and see my children grow into wonderful adults, I mostly take this in stride. But at one point this winter it all got to me, and for a few weeks I cried uncontrollably on more than one occasion.
Fear of relapse was a frequent companion before I hit the five-year mark, when I was officially cured. But that doesn’t stop me from occasionally worrying that the fatigue I’m feeling is a sign of relapse — because that’s one of the signs.
How I Cope
1. I speak up
I express myself through my blog. When I have concerns about my treatments or how I’m feeling, I talk to my therapist, doctor, and nurse practitioner. I take appropriate action, like adjusting medication, or use other techniques when I feel anxious or depressed.
2. I exercise almost every day
I love tennis. The tennis community has been incredibly supportive and I’ve made lifelong friends. It also teaches me the discipline of focusing on one thing at a time instead of being carried away by worry.
Running helps me set goals and the endorphins it releases help keep me calm and focused. Yoga, meanwhile, has improved my balance and flexibility.
3. I give back
I volunteer in an adult literacy program where students can get help with English, math, and many other topics. In the three years I’ve been doing it, I’ve made new friends and felt the satisfaction of using my skills to help others. I also enjoy volunteering in Dana-Farber’s One-to-One program, where survivors like myself give support to those at earlier stages of treatment.
Though most people aren’t aware of it, being “cured” of a disease like leukemia doesn’t mean that your life goes back to what it was before. As you can see, my life post-leukemia has been filled with complications and unexpected side effects from my medications and treatment paths. But despite the fact that these are ongoing parts of my life, I have found ways to take control of my health, wellness, and state of mind.