What a way to Go

The disease itself is classified as a malignancy. Specialists label the disease as a form of cancer because it is a malignancy. But to sum it up shortly, a stem cell goes hey wire in your bone marrow and starts causing your body to overproduce red, white and platelet cells. It is very similar to Leukemias and as a matter of fact they are within the same family of Leukemias. Some people have mild forms as they don't over produce these cells aggressively, others such as myself over produce blood cells like there is no tomorrow.  I know of some patients who have needed one or two phleb's a year, while others like myself seem to never get a break from them.

With each phleb comes a bit more damage to the bone marrow known as burn out. As the marrow spits out all these cells, it burns the marrow out and it is then replaced with scar tissue.  The status of my marrow is now showing signs of burn out. It isn't hard to see when your marrow is under a great amount of stress. You begin spitting out nasty little red cells called Poikilocytosis (tear dropped shaped) and a few nucleated red cells as well. You also find yourself much weaker. This is where heavy doses of the chemo drug called Interferon Alpha 2-A helps to repair the damage to the marrow and slows down blood production.

Ironically, I had such a phobia over needles before I got this disease. I truly mean I had a phobia. I couldn't stand them and avoided them like the plaque. Today, I have gratefully gotten over the phobia and just resigned myself to the fact that this disease is nothing but needles. Bi Weekly blood tests, daily injections of the chemo drug Interferon.  Then the Phleb's itself. But nothing can top the pain and discomfort of a BMB or Bone Marrow Biopsy. Now those truly hurt when your not drugged to the hilt.  The pain afterwards can last a few days as well. I admit I am a chicken when it comes to those. I cant stand them but will have to have them once a year for the rest of my life. There is nothing like having a hole drilled into your hip while your conscious. Ouch.

The disease can be a tough one to manage. Its also hell trying to find a doctor who knows and understands these diseases. They may come across and say they understand them, but truly most Hematologists/Oncologists do NOT know the latest treatment standards so you have to be pro active and educate yourself ( and Doctor ) a great deal in order to survive these diseases. Some Oncologists don't have the first clue as to what meds to use or how to treat you and that in itself becomes very scary.

The disease for me has gotten tougher to manage as I have progressed. The stakes are much higher now and I can ill afford to screw around with Doctors who don't have a good handle on these diseases. Thankfully my family physician Dr. Brockmyre really has a good grasp on PV. I trust him more then most Oncologists actually. While being proactive in the course of my treatment with the addition of being an active member in a support group called the MPD list member group, I have gotten some great information which has made a world of difference.

 Ally has also gotten active and joined the MPD support group and now understands my disease and treatment options very well. She also, while employed at the University, underwent training and obtained her National certification by the American Society of Clinical Pathologists as a Phlebotomist. So now she does all of my phlebotomies at home ( which is awesome ).

Also a friend, Bob Swanson shares the same disease I do. He is extremely proactive as well and shares allot of his information he finds on the net with me. Through all this support, I feel I have a clear cut treatment plan in place, and with my visit to Seattle to see the world renowned stem cell transplant specialist Dr. Deeg, I am very confidant in my future.