Patient Stories

"Having CML has let me look deeply into life's purposes..."
-Jeanelle Street

In the spring of 1993 I had a cough and the usual sinus problems. Usually I took an antihistamine or some pain reliever and waited to get better. However, my cough seemed a little worse and I was going on a short trip with a friend and decided to do her a favor and get something for my cough. The doctor on call suggested a blood test to see if I had allergies, a virus or bacterial infection. I had all Three so he gave me some medication and casually mentioned a high platelet count (750) that I should get checked again. I got over my illness, felt fine, and of course, ignored his suggestion of another blood test.

Then in July, I was going to the beach for a week and I felt very bad, another sinus infection plus dizziness. I went back to my family doctor for more medication and mentioned the high platelet counts from the spring. This time the CBC showed high platelets and a white cell count of 17,000. She said that would be okay if I had a major infection, which she doubted. She gave me a strong antibiotic for my sinus infection with the command that I come back in two weeks for another test. So I went to the beach and took the antibiotic but felt worse and worse. I went back in two weeks and my white count had gone to 27,000. Now we knew I had a problem. She asked me if I wanted to stay in our area or go to Houston. I chose Houston. Imagine my shock when she asked her receptionist for the phone number of the hematology department at M.D. Anderson. At this point she gave me a xanax (an anti-anxiety medicine) and said she didn't want to scare me but there was a possibility of leukemia.

I had decided not to bother my family with unnecessary worry so I went on a short trip to see friends in Mississippi and was popping xanax like candy. My friend in Mississippi got very upset that I wasn't taking anyone to Houston with me and said she was going with me. At that point I decided to tell my mother and my children.

When we got to M.D. Anderson I couldn't believe the support network they had set up. I was whisked around the clinic by a wonderful social worker whom I bonded with immediately. Things moved so quickly and smoothly it was like a mini-adventure. Everyone was so professional and nice; things were as painless as possible. Well, the bone marrow aspiration that my family doctor had described as "completely tolerable" was a little more invasive than I had thought, but I made it. I was ready to go home.

Then a nurse called me to the back to tell me that my type of leukemia was Chronic Myelogenous Leukemia (CML). I gently put my hand on her arm and told her that I had just gotten there that day and she couldn't mean me. She paused and looked at me and said, "Well, if you do have leukemia it is CML and these are some things you need to know". She proceeded to give me literature and talk about injections. She was talking to a strong-willed person who was trying to decode what she was saying, quite possibly, telling the wrong person. I missed a lot of what she said.

I soon met my first doctor, a kind soft-spoken man who explained a little more and said I could call him back in two weeks for my bone marrow test results and a more positive diagnosis. He was so positive and nurturing that I left anxious to get the show on the road and be cured. I thought this might take a few weeks, possibly months and everything would be fine.

The diagnosis was confirmed two weeks later, and I returned to M.D. Anderson to learn how to give myself injections. I must admit that I was very pleased with my first attempt. I actually did something I had never considered as one of life's goals for me. I began my interferon and ARA-C injections that day. I had been told that the interferon would give me flu-like symptoms. I remember felling fine on the two-hour drive home, but then "it" hit and I felt awful for a day or so. The sickness got better and although I never felt really well while on interferon, who cared, I was in 100% cytogenetic remission in just a few months. Once again I felt silly for taking up the doctors valuable time when there was really nothing wrong with me. I was cured.

I stayed on interferon for about a year and though I never felt well I did okay. Then one day I noticed my rings wouldn't fit. I was very swollen. Not to worry, my family doctor kept saying, it is okay if it's gone by morning. But it wasn't gone. It kept getting worse and worse. My M.D. Anderson doctor immediately took me off interferon but things got worse. I was on a diuretic yet I kept swelling and my whole body started shutting down. I went back to M.D. Anderson for more tests and nothing showed up. I kept telling everyone around me that I was fine, but thank heavens they didn't believe me. When family and friends forced me back to M.D. Anderson I was admitted to the hospital-I couldn't lie down because I was drowning. I found out later I was having right ventricle heart failure which is difficult to diagnose.

I was immediately put in ICU at M.D. Anderson, and my family was told I probably would be on a respirator and wouldn't make it through the night. I was in a very foggy daze. But I do remember a wonderful doctor who gave me a Darvon, fabulous ICU nurses, hundreds of tests and IVs, great teams of doctors hovering and trying to come up with a diagnosis, and prayers and love of family and friends. I'm not sure what helped the most but after a few weeks I made a full recovery.

My first doctor left soon after my ICU adventure but he had suggested that a bone marrow transplant (BMT) was very serious and almost out of the question at my age (55). However, a BMT was discussed now and my siblings were tested. The transplant idea was dropped when none of the three matched and an outside donor was not a possibility due to the risk.

Now my only treatment was a low dose of ARA-C, which was fine with me since I was already cured... It follows that I was a little depressed when my Philadelphia chromosome count began to climb. I thought the interferon had done away with them. I didn't know that the interferon was just suppressing them by allowing so many normal cells to develop. I thought the "Philadelphias" were gone forever. I still don't understand what would have eventually happened if I could have stayed on the interferon.

By this time I was thinking that perhaps I had a much more serious problem than I had originally been willing to admit.

Since 1996 I have been working with my third and very pragmatic, compassionate and gentle doctor who believes in doing what works. He believes his patients should be in on the decisions so we have been working with only ARA-C since about 1996 by trying the highest doses I could tolerate. This keeps my white counts low and the Philadelphia chromosomes somewhat in check. It has taken all this time to adjust the dosage. We went a little too high and my hemoglobin (HGB) dropped until I could no longer function. I had blood transfusions about every week or two in the spring of '98. We dropped the ARA-C dose and used injections of Procrit to increase red cell production. Finally in '99 we have increased the level of ARA-C to one I can tolerate and now we are talking about other treatments to add on the near horizon. I enjoy talking to my doctor very much. He always calms me with his positive attitude and is so patient when answering my questions. We have discussed the possibility of low levels of interferon, although we know it might be risky. We have talked about IM, another new drug and even CGP which is still in clinical studies. I don't know exactly what all these do but I do know that it gives me lots of hope.

Although I get very anxious at times I try to keep in mind Viktor Frankl's philosophy. Nothing can happen to me that will take away my choice of how I will think. I have chosen to try and get as much as possible from each day, each person in my life, from my job as an elementary school librarian, my church family and everything that I decide to do that day. I stay away from people who make me feel sick. If I am sad or depressed about this CML thing I have lost valuable hours that I still have, so I try my best not to think about the negative and work with my doctor/friend to do everything possible to hang in while a cure is found.

Having CML is not a good thing. However, having CML has let me look deeply into life's purposes. I feel very fortunate that I have had this opportunity that many people who live to 100 never have. I can actually live one day at a time and set priorities so I can get the most from my life.