I become accutely aware of my condition once a month when I experience the ritual of menstruation. The amount of blood that issues from my body becomes unmanageable. I spend the day of heaviest flow merely trying to avoid bleeding through my clothes. Working on these days is problematic, as any woman reading this might be able to imagine. Men have no concept of this at all.
As an aside, my mother likes to pontificate about men who wish to become women since they will never experience menstruation. "How can they fully become a woman?" she asks, in a rather pissed off tone of voice.
But let's get back to the meat of the matter.
The only way of diagnosing ITP is to rule out all other causes for the physical manifestations present. My bone marrow biopsy revealed nothing. So ITP became the official diagnosis. It seemed like a much ado about nothing scenario: a long way around the block to arrive at the same house.
My hematologist now took on an urgent tone in discussing my treatment options: splenectomy and rituxan. I had done a certain degree of research on both and was comfortable with neither.
A splenectomy involves the removal of a properly functioning organ which, under normal circumstances, plays an important role in the prevention of bacterial or viral infections. Rituxan involves the intravenous administration of a drug - otherwise referred to as chemotherapy - once a week for eight weeks. The hematologist did not bother to define this nuance to me when she first mentioned Rituxan. She did not tell me it is ordinarily used to treat patients with Non-Hodgkins Lymphoma. Nor did she tell me about the 2% rate of death within 24 hours of the first infusion. I had to find that out on my own through my own research.
Rituxan is made of mouse protein. Some people are allergic to mouse protein. The Rituxan web site says people who are allergic to mouse protein should not have Rituxan treatments. I want to know: how are you supposed to know whether you're allergic to mouse protein?
Due to the fact that the hematologist had been less than forthright with me regarding Rituxan, I decided I no longer trusted her. I decided not to follow her recommendations. I opted instead to take Chinese herbs. I told my hematologist of my decision. To which she responded, "That's fine as long as you are willing to accept the potential catastrophic toxicity risk."
"What is the potential catastrophic toxicity risk?"
"Stroke."
As another aside, let me mention that I was outraged by the bizarre manner in which this doctor chose to communicate with me - rather, the way in which she managed to not communicate with me.
I had been researching the Chinese medicine approach to my condition and found a formula sold online that was created specifically for ITP. Everything I read about this formula convinced me that it was my ticket to getting on board the healthy happy train. I ordered a month's supply and started taking it while continuing to take Prednisone. This created a Catch-22 as the herbs would not be fully effective while taking allopathic medications. I could not stop taking the allopathic medications, for fear of hemorrhage, a.k.a. stroke.
The problem with any alternative treatment is it tends to be costly. Health insurance will most likely not cover it. All expenses are paid out of pocket. And there are no sure bets with auto-immune conditions.
I spent three months and several hundred dollars on Chinese herbs to no avail. I decided to seek the assistance of a homeopathic practitioner. Meanwhile, I heard about an EPFX machine - a quantum physics-based bio-feedback machine. A friend recommended I give this a try. So I plopped down a couple hundred bucks on that. And while it was a fascinating experience which left me feeling momentarily relaxed and energized, it seemed to have no impact on my platelet count, which continued to remain quite low.
Week after week, I tried vitamin supplements, herbs, crazy contraptions hooked up to my wrists and ankles, massage therapy, "energy work," and of course prednisone. Due to the homeopathic remedies with which I experimented, I stopped drinking coffee and traded in my mint toothpaste for a fennel flavored one. Coffee and mint cancel out homeopathic remedies. I don't know why this is the case. I just did what the homeopathic practitioner told me to do. Alcohol was out of the picture due to the risk of internal bleeding it would create should I imbibe any. I quit raw sugar, started eating lots of fresh fruits and vegetables. I no longer had muffins at break time. Instead, I ate nuts, cheese and fruit for snacks. I started exercising more. Yet I continued to experience low energy and flu-like symptoms.
Every week, I hoped my platelet count would rise. Some weeks it did indeed go up a tad, only to plummet the following week. Along with plummeting platelets came dashed hopes and growing fear. Fear of what exactly, I cannot say. I believe, though, that I put some degree of stock in my personal victory over this condition. I wanted to win. I wanted to find a way to raise my platelet count without the intervention of a hematologist whom I did not like nor trust. I found the traditional western approach to my condition completely dubious and did not wish to subscribe to it. My fear grew as I realized I could not win this battle. My platelets were disappearing as rapidly as they were being manufactured by my marrow.
Eventually, my fighting spirit died. I grew weary of the alternative approaches. I felt false hope of improved health and well-being was fed to me by various practitioners whom I am now convinced knew absolutely nothing about the mechanics of my condition.
My body has a trickster living inside it. I realized I needed someone to help me figure out how to outwit this trickster. And this thought led me all the way back to my hematologist and Rituxan.
Rituxan is supposed to trick your body into behaving itself. In simple terms, it is designed to re-educate the immune system so that the anti-bodies will in time stop attaching themselves to the poor platelets and let them live in peace.
I decided that Rituxan was my final frontier.
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