At the time I was a 42 year old female who was in graduate school studying chemistry.

In the summer of 1995, I noticed that I was bruising significantly, to the point that a man I was dating at the time commented "if I didn't know you any better I would think that you were being physically abused".  I didn't think very much of it except  wondered why I was bruising so easily.  I guess that is how denial is.

By that fall I was short of breath, suffering from severe bouts of fatigue, night sweats, frequent nose bleeds, and ringing in the ears.  I had an intense feeling of dread like something was after me trying to destroy me.  I am a graduate student at a
university and decided to go to the student health clinic and speak with a Dr.  So I went, and the Dr. gave me something to help me  sleep but did no blood work.

In early January I went on a Virgin Island cruise with my best friend.  She told me later that she was horrified when she first saw me in shorts because of all the buising.  It had been about nine months since we had last seen each other and she could tell immediately that there was something wrong with me.  The changes that had occured in my body were so slow that the people with whom I worked and even my church
family did not notice my physical appearance worsening.  On the cruise I noticed again the sever fatigue, and I was begining to be continuously nausious.  I also had an appetite change.  I still enjoyed eating but found that I filled up faster and I even lost all interest in the midnight "death by chocolate" buffet and opted for the bed instead of the chocolate.

I had noticed that my menstruation had quit and I was still having the ringing in the ears as well as developing craving for ice.  Finally in March of 1996, my mother came to visit me during our Spring break, and when I picked her up at the airport, I could see she became agitated when she saw me so agitated in fact that she didn't hug me when she saw me but stared at me and studied me.  All through out our week together she
kept on questioning me about my physical condition.  I was irritated and just answered her with sharp retorts but toward the end of the week she annouced to me that she would not leave me until I went to the Dr.  So I reluctantly went in to the student health clinic the following week. After hearing of my complaints the Dr. who saw me this time ordered a CBC.  He also told me that I had lost 35 lbs since the last time I had been
there back in November of the previous year.  He asked me if I had intended to loose weight and I looked at him and said "never ask a woman if she  intended to loose weight because she will always say yes".. but I told him that I had not deliberately gone on a diet and had noticed that while I still enjoyed eating that it took much less food to satiate my hunger than before.  Also by this time I would have bouts of nausia where I could not hold my food down and the craving for ice had increased.

My CBC showed that I had a red count of 3.  My white count and platelets were on the low end also but not as much as the red count.  Fortunately, having been overcome with fatigue, I had not left the clinic and so when the Dr. saw my blood count he immediately rushed out to the waiting area and got me. I noticed that with him was a nurse who I knew from my church, Pat, and she was crying and very upset.   He  announced to me  that I had to go to the hospital immediately. Since I did not have a primary care physician I called my friend Norma who was an emergency room nurse and asked her who she would recommend.  She recommended a Dr. who she thought was extremely capable we called him and I went to the emergency room.  This was the Middle of March, 1996.

Because of my compromised immune system I was given a private room, on the maternity floor of the hospital.  The maturnity floor is the one that has the least infection.  The hospital had a new oncologist/hemotologist who had just moved into the area about six months before. After receiving two units of blood over night, he came and visited me and talked to me about my symptoms.  He told me that the main symptom I had, loss of blood, could be due to a number of things.. everything from a bleeding ulcer to aplastic anemia.  So they did CAT scan, bone marrow biopsy, and the diagnosis came back as Stage IV Small Cell Lymphoma of the bone marrow.  He told me right then and there that he thought that I was an enigma surrounded by a question mark.  He also told me that he ws uncomfortable with my diagnosis because I also had some other symptoms that didn't quite match this diagnosis...namely an enlarged spleen and no centralized tumor. But he said that the two hospital pathologists had studied the tumor cells which were SMOOTH and lymphoma like and he himself had viewed the slides and that lymphoma was the only logical diagnosis.  I also had some other complaints due to the lowering of my platelet count including numerous staph skin leisions that did not heal.  One in particular was on my breast and had to be biopsied.

So I immediately began CHOP chemotherapy followed by 5 days of prednozone which is a standard chemo regime for lymphoma.  The chemo and the blood transfusions took a toll on my veins and my veins took a toll on the Drs., nurses, and me so a portacath was installed to increase everyone's quality of life.  I have to admit that it made a world of difference for me.  In May of that year, I had finished my third CHOP chemo therapy and the oncologist ordered another bone marrow biopsy to see how the chemo was affecting the tumors.  They saw a greater proliferation of tumors and no improvement.  My blood counts were showing also that the chemo had no affect on the tumors all it appeared to be doing was supressing my own immune system so that the tumors could proliferate.

In June, another chemo. protocol was tried, ESHAP with a similar result.  By this time I had lost all my hair, and I was recieving nearly weekly blood transfusions and my Dr. told
me that our options were running out.  It was in June that the posibility of a stem cell or bone marrow transplant was being considered. In July when my stem cells were harvested, 7 million were needed for a successful transplant, the count achieved by my harvest was only 70,000 there was no way that we could harvest enough and I was disapponted to learn that there was no technology to clone stem cells in place.  I was placed on the National Bone Marrow list and a match was found for me in New Zealand.   I realised then what a tremendous advantage cloning of their own stem cells could be to millions of cancer sufferers.  It is sad that this idea has never been funded.

By the end of July my Dr. began to talk to me about the possibility of death.  He began to encorage me to fill out a living will and to think about what might happen in the future.  By the first of August, the Drs were very concerned about my survival.  I had recieved over 20 blood transfusions by that time, had 4 bone marrow biopsies, and my condition only worsened.  They sent my slides to everyone.. Fred Hutchinson, Sloan, Duke, Vanderbilt, St. Judes.. and the consensus all came back the same.. "lymphoma".

Toward the end of August, my Dr. was very concerned and it was then that he told me that probably I would be dead by Thanksgiving of that year.  He encouraged me to begin to let my family know what my wishes were concerning my death and he told me that he would try to keep me as comfortable as he could till the end.  I was scheduled for another blood transfusion the next morning and when I came in for "my blood" as I called it..he called me into his office.  He started off by going over the history of my disease.  my symptoms, the results, etc.  Then he said, "you know that I have always been uncomfortable with the diagnosis of lymphoma but that is essentially what the biopsy slides showed". He told me that he had looked at all the biopsy slides at least 20 times puzzled that there was absolutely no response to the chemo.  Then he told me that I had exhibited the symptoms of a disease called "hary cell leukemia" which is curable and that he had seen this disease twice before in his practice.  He said that he was unwilling at first to consider this could be hairy cell because the odds that a hemotologist like himself seeing this disease  in his career three times was astronomical.  But, he said that he was going to talk with the pathologists, and ask them to do one more bone marrow biopsy and to have it tested specifically for hairy cell.  My pathologists were very agreeable to try again and with in a few days another bone marrow biopsy was taken and the sample was tested for hairy cell.  The results came back consistant for hairy cell and immediately I was fitted for an infusion pump and began the 7 day IV treatment of the drug 2CdA.  There were dangers to me undergoing this treatment.  If I had hairy cell, there was a good chance for recovery, if I did not have hairy cell, then the treatment would kill me.

I ran a fever almost the whole time I was being infused with the drug.  This was the first time that actually I felt sick from the chemo.which I was told is a good sign.

After the infusion, we waited, and watched the blood count.  I was taking Neuprogen daily to increase my white count which by then was running about 500 on a good day.  Ever few days I would go in for a CBC.. watching and waiting.  About a month later.. I went in on a Monday for a CBC, and having been scheduled for a blood transfusion the next day, came back the next day, and my white count jumped from 500 to 1500.  The Dr. came in grinning ear from ear, my nurses came in crying, I was crying.. and the Dr. took me off neuprogen.  My counts steadily improved.. and in another few weeks they did the final bone marrow biopsy.  He told me that where as before, the next to the last biopsy there was little or no activity inside my bone marrow.  That the tumor cells had proliferated to the extent that there was about 95% of the bone marrow contents was tumors with maybe 5%  being the normal bone marrow components.  Now, he said, the situation had become reversed, with 95% of the bone marrow contents being composed of red cells, white cells, and platelets and various stages of maturity.. and no cancer cells were observed.  He said that the residual chemo. left in my body would probably take care of the rest of the tumors.

I hold no resentment nor bitterness at my doctors for the misdiagnosis.  Being scientific myself I realize that tumors are living things and many times living things do not always appear as they should. I am thankful that my doctors were willing to consider that a mistake had been made because if they had not, outside of a creative miracle, I would be dead.

I have continued on my recovery.  I have a yearly CBC which has shown consistant high normal levels of the immune components.  I have some physical complaints that I am not sure of what their origin is. Since the original chemotherapy destroyed my ovaries I was put immediately into menopause and I suspect a lot of my "ailments" can be linked to a lack of hormones.

My hair grew back curlier and darker than when it fell out and I learned many valuble life lessons.

I am a spiritual individual, a Christian, who strives to have the presense of Jesus Christ in her life every day, and I can say that my faith sustained me through my ordeal.

I will always be grateful to my wonderful Dr. (Dr. Robert Donnel) who was a gift I believe from God.  Come to find out, he had done research in lymphoma and even worked with the Dr. at Scripps who is the leading authorityon hairy cell.  He has since moved on to another area of the country now but his affect on my life has not been deminished.  I am still a local celebrity at the hospital and enjoy lots of attention when I go there to visit friends.  I keep up with my other Drs. and visit with them periodically.

Laura Sealy

Oxford, Mississippi

U.S.A.

laurapop1953@yahoo.com