What is it? How Did I Know I Had It?

My main purpose for this blog is the hope that I might help even just one person.  So I'd like to dedicate one serious session to a few of the facts about the disease and my history with it.

Lymphoma is a cancer of the blood and the lymphatic system.  Those two are woven together throughout our entire central body.  Thousands of lymph nodes attached to vessels from our groins to our necks.  Several people have suggested I take up knitting during the day.  It would certainly be a powerful metaphor of those two systems weaving together, but hey.  I also see knitting as a symbol of "the end."  I just imagine a framed, crooked and creepy afghan hanging above my casket as mourners cry, "He made that.  It's his lymphatic system."

OK, Bill.  Focus.  You said you want to help someone.  You're digressing.

For more detailed, and very easy to comprehend, information about lymphoma, a visit to the website for the Lymphoma Research Foundation is well worth it.  I have visited it several times, and will be attending a dinner that they are hosting here in LA on April 23.  The website address is www.lymphoma.org.  In addition to personal and private assistance, they offer podcasts, radio broadcasts, and teleconferences.  It is extremely comprehensive.

And now my personal story.  About two years ago, I began feeling weak whenever I would exert myself.  At the gym I felt dizzy and unusually out of breath.  I mentioned to a close friend that I thought there was something wrong with my blood.  I couldn't even do the treadmill anymore. When I asked my primary physician about it, he told me that if indeed I had anemic blood, it wouldn't show up in my tests for several months.

Sure enough, about six months later, I had anemic blood.  He put me on Procrit, a weekly injection to improve blood counts, but I seemed to still get worse.  I have learned after 22 years of being HIV positive to recognize my own body and its signals.  More than a few times, I have been able to tell the doctors they were wrong.

I have developed a wonderful relationship with my doctor.  He is incredible.  Never in all those years was there a medication that made me undetectable for the HIV virus, and we had a joke that "there's nothing in that black bag for me."  Then unbelievably in June I started two new trial medications that did just that.  I became undetectable.  But my t-cells wouldn't go up and I seemed to continue to get worse in fatigue and lightheadedness.  

Finally in September, 2007, they did minor surgery to remove a lymph node to rule out lymphoma. Sure enough, they removed one of the probably 2% that wasn't infected.  I call it that damn lying lymph node.  Three doctors determined that I just had Immune Reconstitution Syndrome (another painful IRS).  IRS is the body's healing after becoming undetectable.  Once again, I suspected differently and continued to get much worse.  After the surgery, I was very swollen from the waist down and had a lot of pain around the groin area.

Finally in November, after a new round of tests, Dr. Defoto called me one day and said in such a loving voice, "I truly hate to tell you this, but I strongly think you might have lymphoma after all."

It was shocking of course, but at the same time relieving.  He gave me the name of an oncologist and I saw him the next day.

I did CAT scans, PET scans, and even a bone marrow extraction.  They all came back positive.  I think about that day of diagnosis, December 23rd, much like the day that Dad died a year earlier. He was very sick, he was ready to go, and we all knew it was coming.  And yet when it happens, there is no way to be prepared.  It is still shocking and painful.  Once I cried that entire afternoon, I was ready to begin.  Chemo started January 3.

After treatment one, the pain in my groin and all the swelling was completely gone the next day. The doctor told me that already, the worst was gone.

I hope in some way this story will help someone in the same situation.