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Fatigue, difficulty breathing, and excessive bruising were the first symptoms.  I had been a singer for many years in clubs. After collapsing at the end of a show in 1995, I was diagnosed with emphysema from 30+ years of second-hand smoke.  In the following year,  all symptoms increased, aching, fatigue, bruising, swelling in various places.    I was silently panicing when the lymph glands under my arms were so enlarged I could not  put my arms down by my side; my mother had undergone a bi-lateral mastectomy.  After 7 months of working up my courage, I consulted a doctor who told me he didn't want to talk about that now.  Surprised at his reply, I left his office feeling empty and more upset than before.  I inquired into the American Cancer Society to see if I was eligible for a mamogram.  The answer was, "yes, if I had $750," which I did not. I was even referred to a pulmonologist, who asked why I was there. The asthma meds helped my breathing some,
but did nothing for the rest of  my symptoms.

I started developing kidney stones, and kidney infections.  Four doctors later, and after 10 days of Cipro anti-biotics failed to help another kidney infection, I was sent to an emergency room where I slept on the floor for 7-1/2 hrs. before being seen.  It was now July, 1997.  A blood infection revealed HCL rampant in the bloodstream.   I was told it wasn't even necessary to do a bone-marrow test!
No one there had treated HCL. A hematologist tried to get me into City Of Hope, a cancer center in Los Angeles previously known for their charity work, but I was refused for lack of money.  After two years of being out of work due to the illness,  My own insurance had run out, I had maxed out all my charge cards, and ultimately was dumped on the county system.

Depression resulted from the chemical imbalance in the brain.  But nobody tells a leukemia patient.  You struggle alone through it for months or years before someone naunchalontly says, "Oh that comes with the leukemia. We have medication for that".  I am on my 14th anti-depressant.

In April 1998,  a surgeon inserted a portacath in my right shoulder for 2-CDA.   The portacath was miserably painful, I was back in emergency within a few days.  I was given 3 shots of morphene which did little to dull the pain.  I was sent home with oral morphene, hooked up to the chemo pump by an inexperienced visiting nurse, and left alone for 7 days. I developed pnemonia, but declined another trip to the emergency room after receiving incredibly rough treatment the time before.  (I am going to side-step here shortly to explain this.  A story of mistaken identity--another  woman in a purple sweater fained being seriously ill so she wouldn't have to wait.  I could hear  the staff talking just outside the curtain of the cubicle.  A doctor and an assistant thought they would really "give her the business" to teach her a lesson; and while being held down by two nurses, they were unmerciful as they pushed and poked irregardless of how loud she screamed. The problem: I also was wearing a purple robe, and instead of her, yes, they did it to me! They shoved their fingers into the point of
surgery so hard that blood was leaking from it. Later I reported it to hospital officials and was told it never happened. All I wanted was an apology for being traumatized).   I saw the hematologist a few days later, was given more pills and again sent home to die.  Normal weight for me was 137 lbs.  Now down to 92 pounds, and in more pain than I could have possibly imagined, (and I thought kidney stones hurt), unable to turn myself over,  I prayed for all merciful God to let me die quickly.

A month following the chemo,  I demanded the portacath be removed, or I would tear it out myself.  The pain was only half as bad after removal, and the feeling in two of my fingers returned.  The surgeon refused to return my calls, and his nurse did her best to discourage me from seeing him for my post-op appointment. I have ping-ponged from the Pain Clinic to Physical Therapy with little success in restoring the use of my right arm.  For a musician, this is devastating.  The medical facility I had been going to moved 140 miles away.  I located a hematologist who is only 35 miles away, but now that I have remission, I am made to feel that I am taking up his time for no reason and he ignored my complaints.  I showed up for my regularly scheduled routine lab test (every 3 months) and was asked by the nurse "What was so important that you couldn't wait to see the doctor some another time?"  After many months of complaining about swelling in my neck, difficulty in swallowing, earache, fever, abdominal pain and swelling, I went to another doctor and was diagnosed with lymphodema.  My lymph glands have been damaged from the leukemia, and need to be drained
every day to eliminate the toxins. Finally, the fevers have stopped, I can turn my neck again, and the
constant nausous feeling is subsiding.  My best advice: get that second opinion, and if that doesn't work, get a third and fourth opinion.  Help is out there, but it can be difficult to find. 

September, 2001. The reason I am given for the length of time it is taking to re-coup is because I was not diagnosed or treated in a timely manner.  Money and type of insurance do make a big difference in the quality of care you get.  Residual problems remain, the damage to the thyroid, kidneys, liver, lymph system, depression, arthritis from the chemo, and of course, the constant pain in my shoulder, attributed now to damaged nerves and a nicked tendon under my arm.  I applaud the many surviviors who have repeated chemo for another chance at life.  After my first experience, that is something I will NOT do!

It is God's will that I am alive today.  I received His healing miracle and His message that I am here for other people.  I resumed studies I had begun when I was only 18 yrs old, and in July of 2000, at 58 years old, I became a fully ordained minister. My hardest task now is in learning to forgive the people whose mistakes I have to live with every day, to try shutting out the pain and say "Forgive them Father for they know not what they do".

My legacy for other patients and survivors is in a CD of music written from my experience.   It has taken me two years to record and will be released mid-October, 2001.   It is entitled "Eye Of The Hurricane".  For anyone experiencing the feeling of isolation that comes with cancer, the main message is you are not alone.  Matter of fact, you have a lot of company, and guess what, we all feel the same way.

I would like a portion of the sales from the CD to go back into developing a better and less painful option for delivering chemotherapy, rather than the present oversized portacath which leaves abundant scar tissue, and restricts movement. Perhaps someone knows where this is being developed.  I have made inquiries, ACS, Leukemia Soc., etc over the past year with many referrals, but no success in obtaining information.