This is my first attempt to share my story since I have been ill. To start with, NK (Natural Killer Cell) Leukemia is a very rare cancer, which was discovered only 2-3 years ago. It is similar to Hairy Cell Leukemia. According to my doctors, to date, there have been no cures or remission for the 100+ people across the world who have it. The prognosis is virtually unknown by the medical profession.
To start with, I am a 51-year-old female who was an active Type A personality. I had an accomplished career as a technical recruiter with 30 years' worth of work experience behind me. In October, 1997, my husband and I went on a cruise with two other couples. While on the ship, I had no energy, had a serious toothache that needed attention. When I got home, had tingling fingers and was recovering from some awful mouth sores.
I went directly to the dentist, where a root canal was performed, followed by 10 days of antibiotics for the infection. I also went to my family doctor for the tingling fingers, mouth sores and general fatigue. She first said she thought my tingling fingers were carpal tunnel, since I had just started a new job, with a new workstation. Since I was insistent that something else was wrong, she ran me through blood tests, which resulted in a very low white blood count. She couldn't find anything, so she referred me to the infectious disease doctor, which led me to the hematologist/oncologist. During these visits, I was experiencing high fevers and the tooth infection never went away. That week, I had a 104-degree temperature. My husband then said, "We're getting you to the hospital!" Sure enough, after two days of extensive tests in the hospital and a bone marrow test, the doctor first confirmed that I had Acute Lymphoblastic Leukemia---treatable and curable. Needless to say, we were in total shock. After the dazed response, my doctor assured me that it was very treatable.
So, the saga begins...I started chemotherapy which lasted 6 weeks. I actually had few side effects, although I was losing my hair. I was on danorubicin, vincristine, methotextrate and many other medications. I was destined to lose my hair, so I got a "buzz" cut, since I couldn't deal with losing clumps of my hair each morning. Initially, I reacted fairly well and they told me that I came through it like a 16-year-old.
Then one month later (Christmas), I began having fevers and was hospitalized again. Prior to this, I had a port in my chest, for easy access for blood and future treatments, as well as a port in my skull, so they could be certain that the chemotherapy would cover the brain area. Well, my hospital stay went on for weeks, since they we're trying to find the infection. I became jaundiced. My liver, spleen and heart were in jeopardy.
Now for the news...upon completing the 3rd bone marrow test, my oncologist informed me that 98% of the lymphoblastic cells were gone, but that a new leukemia had surfaced...NK. He believed that the first diagnosis actually camouflaged the NK. Now, I had to deal with an entirely new leukemia---for which there was no cure, no known remissions, no positive track record across the world. My doctor(s) were very busy researching with other well-known cancer centers.
At this point, my husband, daughter and I were completely overwhelmed, saddened and angry. During this horrible time, my oncologist, who is an excellent physician was also puzzled and baffled by this new diagnosis. He immediately took action by closing up my head and chest ports, to alleviate possible infections. I also had a semi-coma experience for 48 hours where I could hear everyone talk, but I could not communicate to them. It was very scary---I actually, thought I was dying at this point. After many consultations and 2nd opinions, my doctor decided to give me leustatin for 6 days (24/hrs/day). This was the chemotherapy that was used for hairy-cell leukemia. My official diagnosis was CDA3 (Negative), NK Leukemia.
After the very intense chemotherapy treatment, my liver, which was already in jeopardy, took a nose-dive. On Sunday, February 8th, my liver count was at 19 (you're dead at 20). I was completed sedated and unaware of what was happening. The doctor had asked my husband to call the family members in, since he gave me less than a week to live. I would go into a coma and seizure state. Still not knowing the seriousness of my condition, my brother from Vermont and my dad from Florida came to the hospital. At this point, I had some sad feelings, but was still not alert enough to realize.
Now for my miracle--my next door neighbor (Mike) who was following my illness from the beginning, as well as my many friends and relatives. He had called his theology professor friend in Florida to tell her about me. After a long conversation, she instructed him to go to the hospital, put his hands on me and say a particular scripture/prayer. My family was present as I sat up in my chair. It was the most powerful experience I had ever had in my life. While I was very dazed, I was able to listen and absorb what was happening. The 2nd day my liver count improved slightly. By the 3rd and 4th day, it was getting better and better. By the end of the week, my liver counts were completely normal. Needless to say, the doctors were shocked, since there was no medical reason why it turned around. They call me their miracle patient. My family and I were elated and so happy that I was given a 2nd chance. My only setback was that the chemotherapy also affected my muscles and nerves, leaving atrophy and neuropathy in my feet and calves. After my long hospital stay, I then started my daily physical therapy at home. It has been a long recovery process. I was unable to walk, climb stairs, feed myself, etc.
Here it is...May 28th; I am walking, driving and taking myself to the wellness center to workout on the machines and aquatic aerobics. I feel terrific and have finally gotten relief from the nerve damage in my feet. The neurologist says it should eventually go away. The last 3 monthly appointments with my oncologist were excellent; normal blood counts and inactive cancer cells at this time. I am so pleased to be typing this story, since my hands were not workable three months ago!
My heart was pounding prior to my oncologist entering the exam room. This was my 2-month checkup, and while my body was telling me everything was going to be okay, I was very anxious to hear the results from my blood work. His perky smile was an immediate relief. He confirmed that my blood counts were all normal and that he did not see any leukemic cells at all. My husband and I were absolutely thrilled. Tears filled our eyes as the doctor explained to us that, "I was going to die back in February." He is so stunned by it all, and of course, the medical profession has a hard time dealing with "divine intervention". I shared with him the data I found on Internet from, a former cancer patient with Hairy Cell Leukemia, who happens to be a medical researcher with an on-line service, as well as an author.
The common thread between this man and myself was that the same drug 2-CDA (Leustatin) was used for both of us for the 24-hr/7-day cycle. While we had different leukemias, my doctor through his research back in February felt this was the only possible drug that might help. Well, it appears that we have stuck gold. My doctor was correct in his assumptions with Leustatin, and I feel that I actually confirmed this by my research. Before my doctor proclaims remission/cure, however, he wants to see me in 3 months, and then a bone marrow test one year from now. As we all know, the medical profession works on scientific theory, which is fine. Meanwhile, I will work on "divine intervention and prayer" as well as alternative methods, such as positive thinking, acupuncture, massage therapy, water aerobics, vitamins and herbs.
Needless to say, a big weight has been lifted. With this experience, I have a new appreciation and awareness of what life is and how God has re-entered my life in a new and meaningful way.
I am happy to report that my NK Leukemia is still in remission. My oncologist continues to be surprised, based on my condition early this year. He will now document my case across the medical profession. I feel absolutely great, working in the garden, taking water color lessons. The nerve damage and muscle atrophy in my hands and legs that resulted from the intense chemotherapy are almost 100% gone. LIFE IS VERY GOOD.
Thank you for taking the time to read this. My prayers go out to all of you.
Still getting good reports from my oncologist. The blood work is normal and there are NO leukemia cells. My husband and I have been traveling and enjoying every moment of every day. I've got my nerve damage under control, and it looks like 1999 is going to be a great year. For all those out there who have not been as fortunate as myself, I deeply want to send my spirit, hope and prayers to all of you for the challenging days ahead.
God Bless you and your families.
At the beginning of this year, my husband I have continued to travel as we have the past couple of years with no re-occurrence of leukemia or heath problems since February 1998. After returning from the Canadian Rockies (definitely God's country), in August 2002, I had an appointment with my NEW gynecologist. I changed doctors since I couldn't get the old doctor to agree that I should come off estrogen (premarin), after being on it for 11 years, following my hysterectomy. Well, she agreed that with all the controversy about the correlation of heart disease and cancer, it made sense to stop taking it, given my history.
So, I stopped taking premarin on August 6th and exactly 2 weeks later I discovered a rather large lump in my RIGHT breast, enough for me to react very quickly. As luck would have it, I already had scheduled a mammogram the following Monday. The mammogram revealed a 2-cm. mass---and they ruled out a cyst. The next steps were a whirlwind; ultrasounds, left breast mammogram, fine-point needle biopsy. The biopsy revealed a malignant mass. Horror and efficiency took over me all at the same time. I quickly gathered up my contacts and got 2 recommended general surgeons (specifically breast cancer surgeons).
I decided to go with the surgeon who not only had a great track record, but my gut-feel and her demeanor was the tiebreaker.
In conjunction with the gloomy pathology report from the needle biopsy by the first surgeon, the 2nd surgeon performed a lumpectomy procedure. During the 30-minute procedure, she immediately called my oncologist from the operating room to discuss what she had found. She indicated that it was not breast cancer, but rather a non-Hodgkin's lymphoma (indolent; slow growing malignancy). It was confirmed a few days later by the 2nd pathology report. Within that week, a CAT scan was done, followed by a bone marrow test by my oncologist, and a scheduled PET scan. At this point, it was not a matter of what it was, but where else in the body it existed. (Incidentally, a PET scan is a rather new technology---Positron Emission Topography), using IV radioisotopes and sugar water to determine cancer cells at the molecular level).
After several days of waiting for all the test results, I tried to stay positive and asked God to give me the strength to handle whatever came my way. At this point, my emotional state was a bit shaken, but I had been down this road before. My husband is the ultimate optimist, so his support sustains me time and time again. This time, however, my faith was a whole lot stronger...you see, I had been working on my relationship with God the last couple of years. I was more prepared this time.
Well, my prayers have been answered again, with another positive outcome. This past week (September 23, 2002), my oncologist contacted me and said that all the tests came back with NO other cancer in my body. He believes that the indolent (or slow-growing cancer found in the breast) was a residue of my leukemia in 1998, and that it was contained only in the breast and nowhere else in the body, and that no treatment or additional surgery was needed.
The real miracle here is that I was lead in the first place to seek out a GYN doctor who agreed with me to stop taking estrogen. Please understand that I am not saying that estrogen caused the cancer-----what I am saying is that because I stopped taking estrogen, my breasts were less dense, causing me to find the lump very easily. None of my mammograms picked up this lump before, probably because I have always been fibrocystic. Keep in mind that mammograms are not always effective, so self-examination on a consistent basis is key.
I CONTINUE TO BELIEVE IN MIRACLES, AND I HOPE THE READERS OF MY STORY WILL UNDERSTAND HOW IMPORTANT A PERSONAL RELATIONSHIP WITH GOD IS AND HOW POWERFUL PRAYER CAN BE.
Editor's Note: See also Ann Marie Dismuke's December 1999 Survivor Story Update.