Fool Circle, The Final Documented Chapter of an On-Going Saga: Radioactivity

Today, I became radioactive.

I allowed myself to become radioactive for the purpose of ruling out the existence of cancer in my breast.
Radioactivity is safe, the medical professionals say. However, post 9/11 security measures make it necessary to lock the room in which the BSGI is performed. You wouldn't want the radioactive matter stored in that room to get into the wrong hands, even though it isn't enough to make a "dirty bomb." Likewise, a support person cannot accompany me to the BSGI room. A) They can't be trusted and B) while the radiation won't hurt them, there's no point exposing them to it.

The radioactive isotope that was injected into my blood is called Technetium-99m or Tc99m. Tc99m has a 6 hour half life. A half life is the amount of time it takes radioactive material to become half as harmful. The half-life is defined in terms of probability: It is the time when the expected value of the number of entities that have decayed is equal to half the original number. The degree of severity of radiation is measured in half lives.

Confused yet?

The syringe used to inject Tc99m into my veins becomes radioactive and must be stored in a lead box with all other radioactive syringes. This lead box full of radioactive syringes must be left to decay to "less than background," which is ten half lives. Therefore, the syringes, and the gloves worn by the nurse when handling Tc99m filled syringes, must be stored for 60 hours before they are considered a safe bio-hazard. At that point, they are removed from the facility and taken to an undisclosed location.

Before injecting me with Tc99m, the nurse asked, "Are you planning to fly in the next day or so?" I laughed and said, "Yeah! That would be awesome!" The nurse looked confused by my response. And this confused me. I said, "Wait, what do you mean?" She said, "Are you planning to take a trip on an airplane?"

"Oh. No."

I thought she was making fun of the fact that I would soon become radioactive like all great superheroes. She was just probing me in order to ascertain whether or not to provide me with a special card to present airport officials in the event that my radioactive blood would set off security devices.

The test itself was pretty uneventful. The radioactive isotopes felt pretty neutral in my veins. I then subjected my breasts to the Dillon 6800 for roughly half an hour. this camera has a shelf and clamping device similar to the mammogram. The main difference is that it was not necessary to mash my boobie flat. And each picture took roughly six minutes. She took three of each breast.

The nurse then instructed me to wait. And then she told me she wanted to do a sonogram of my left breast. And after that I waited for the doctor to discuss the results.

The doctor who had taken care of me previously is a woman, a breast cancer "survivor" herself - Dr. B. I have absolute respect for her and no problem with her manner whatsoever.

Dr. B. was not in the office on this day. Dr. D., a man, was on duty.

For the record, I do not trust my female parts to a male doctor. On this occasion, I thought I would be alright since all he'd be doing was tell me the results of my test.

Dr. D. is a bit overly enthusiastic in manner. All smiles and bouncing like Pee-Wee Herman on a new bike. He ushered me into the mammogram room where I sat in a chair - unnecessarily - while he said in a brisk and bubbly voice, "Well the left breast looks ok. There's just that one problem area in the right breast. But we'll take care of that tomorrow."

I stared at him stunned.

"You've scheduled a biopsy for tomorrow, right?" he asked.

Silence. Staring.

"Dr. B. discussed this with you already, did she not?"

"I, um..."

"Here....let me get the form."

His rapid-fire delivery floored me. I sat like a deer in headlights while he dashed out to retrieve a copy of the form that Dr. B. handed me after my repeat sonogram. It indicated her recommendation for the BSGI and biopsy.

Still confounded, I offered, "I didn't schedule a biopsy. I thought I was to schedule a biopsy pending the results of this test."

"Your test was positive."

"Oh. Ok. I guess I'll schedule a biopsy now."

I stood up and began to stride away.

"Are you upset?" he asked. "It seems like I've upset you."

"Yes. I'm upset."

"I thought Dr. B. went over all this with you."

"Yes. I just....I'm sorry, it's not your fault. I'm upset....it's not your fault."  I walked away.

Dr. D. called out, "Don't you want to put your clothes on?" I was still wearing the lovely medical gown.

"Oh. Yes."

Fool Circle Part 6: Note to Self - Say No to Fear

Recently, I had my first mammogram in four years ago. There's a reason I allowed so much time to lapse.

The last time I had a mammogram, the technician located a suspicious area that was promptly examined via sonogram. The sonogram revealed a mass that seemed to be problematic. It was determined that I needed to consult with a surgeon about having a biopsy.

My memory of the sequence of events that followed is vague.

I remember thinking a lot about ex-husband guy - how I needed to make peace with him - how if I was to die, my children would be forced to live with him, a man with whom I could no longer converse without volcanic eruptions of the emotional variety. This was the predominate thought.

So I tried my best to make peace with He Who Had Been The Source Of Much Suffering in my life. I had two weeks - the amount of time leading up to the scheduled breast biopsy - in which to do this. After that point, I would of course be dead.

This is how I imagined it.

In those days, a biopsy was handled differently from the way it is performed today. It was a procedure performed under general anesthetic at the hospital. A sample of the tissue was taken and if it was determined cancerous, breast tissue would be removed on the spot: either just the lump or the entire breast or both breasts or both breasts with accompanying lymph nodes. The severity of the operation could not be known in advance.

On biopsy day, I arrived at the hospital around dawn. I waited in a room that felt like the holding tank for prisoners on death row awaiting execution. When my name was called, I was taken to a basement area where an IV was run. The chill of the fluid entering my veins reduced my body temperature which nicely complemented the frigidity of fear.

At this point I was placed in a wheel chair and was pushed to an elevator which took me to a pre-op room. Here, a guide wire was to be inserted in my breast that would lead the surgeon to the problem spot. In order to run a guide wire, a technician would use a sonogram to locate the mass. Then, a wire would be inserted at the exact spot where tissue needed to be removed.

Lying on the table, preparing for the unknown, understanding that if the mass appeared cancerous, I could awaken with a good portion of my breast gone, if not the whole thing. I could not even entertain the notion of both breasts being gone when I awoke. Nor could I conceive of the post-surgery treatment that would inevitably ensue. Panic soon overrode all thought and my mind became numb.

The technician glopped gel on my breast and slid her tumor-seeking device along my it. Occasionally she made sounds indicating perplexity. She called in another technician who echoed her sounds. They called in the surgeon who looked at the sonogram and pronounced that I had a series of cysts. There was no need to perform a biopsy.

I was wheeled back to the basement quarters where the IV was removed and I was discharged.

How did this happen? How did a suspicious-looking entity in one person's eyes become a series of harmless cysts in the eyes of another? And another? Did no one else examine the results of the initial sonogram? Did the nature of the mass morph into a less suspicious-looking entity during the two weeks I waited for a biopsy? Did my work to make peace with ex-husband guy generate this metamorphosis?

I was in shock and did not have the presence of mind to generate questions of this nature.

This episode prevented me from having regular mammograms after that. In retrospect, I cannot defend my decision to avoid this procedure. I am, however, fully aware of the fear factor in the equation.

Recently while performing a self exam, I noticed an area in my right breast that felt wrong - like it didn't belong there. I decided to set an appointment with my gynecologist, hoping to avoid another potential breast imaging fiasco.

I like my gynecologist. She's got the sort of integrity that makes me want to listen to her. So when she, too, felt the lump in my right breast was suspicious, she sent me to have a mammogram and sonogram at the same lab that does hers.

The mammogram is a fascinating process. For women too young to have experienced this procedure, and for men who never will, here's how it works:

Arrive at the lab. Do not wear deodorant or lotion. After sitting in a waiting room, a nurse will call you - and maybe a couple of others - and ask you to follow her. She leads you down a hallway to a row of changing rooms. Vinyl curtains, reminiscent of the coverings of beauty parlor chairs, hang in the doorway of each "room." You are instructed to remove your blouse and bra and put on a half gown with the ties in the front. Afterwards, you wait in another waiting room. And then, you go to the mammogram area.

The mammogram machine is an over-sized C-clamp. It has a nice little shelf on which you rest first one boob, then the next. Once your boob is on the shelf, the attending technician commences the clamping process. This entails bringing the upper section of the C-clamp down upon your boob until it is as flat as possible. Then, the technician excuses herself long enough to run across the room to take a picture of your flattened boob and its contents. She repeats this process on the other boob. Then, she gets a side view. The whole machine revolves around and your boob gets squeezed from its inner side to its outer side as opposed to upper side getting mashed to the lower side as in the previous steps.

When you have problem spots like me, an additional set of pictures is required with the x-ray equivalent of a telephoto lens. So the whole process described above is repeated with a special viewfinder added.

Now, it probably isn't politically correct or even good form to admit this, but the mammogram kind of excites me. I basically walk around half naked in front of another woman and allow her to manipulate my breasts. To me, the clamp is less painful, more stimulating. I recognize this is not the case for most women.

After visiting the mammogram room, I go to the sonogram room.

The sonogram is a fascinating technology. Gel is applied to the breast. Somehow, this serves as the conduit for the sound waves emitted from a device called a transducer. The transducer sends out pulses of sound which travel through the breast and basically send back echoes. Understanding how all this translates into imagery requires more knowledge of physics than I currently posses. But in the end, a different sort of image is created than that of the mammogram. And when used with the mammogram, the sonogram proves a useful diagnostic tool.

After examing the results of my mammogram and sonogram, the doctor said that she suspects I have a cluster of cysts. She tried to be reassuring. But she wanted me to return for a repeat sonogram five days after my next period. She told me that if it is indeed a cluster of cysts, its structure will change with the fluctuation of hormones.

I had to make an educated guess to schedule my next appointment. My period has become irregular, I assume because of my age and the phenomenon of perimenopause. My guess proved to be inaccurate, so I had to postpone the repeat sonogram for a week.

The day of the repeat sonogram, the doctor informed me that no noticeable change appeared in the structure of the mass. It was now time to embark upon another diagnostic test: the Breast-Specific Gamma Imaging or BSGI - a procedure involving the injection of radioactive dye and a specially developed camera: the Dillon 6800. This test indicates areas of increased metabolic activity in the breast. As cancer cells display uncontrolled growth, the BSGI is a fairly accurate diagnostic step to take prior to, but not instead of, having a biopsy.

As I contemplate the set of circumstances that confront me now and compare them with those which ocurred four years ago, I am reminded of the Native American teaching associated with the totem animal Rabbit. Rabbit teaches us about fear. He says that we call our fears to ourselves. In so doing, the very thing that we fear will get us in the end.

Fool Circle Part 5: Full Circle

Is there an unwritten law that dictates doctors' offices be kept at sub-zero temperatures? It mystifies me that time and again I find myself in various stages of undress awaiting a test or a physician or the completion of a treatment in a room that is freezing cold. It was no different in The Treatment Room at the hematologist's office.

I wrapped the puffy pink sweater emblazoned with my magic brooch around me. I draped the lovely wool shawl from Tibet over my legs and covered my left hand so my peripheral vision became willfully ignorant of the catheter penetrating my flesh. And I draped my senses with the loveliness of sound. Richard Buckner, Vetiver, Ike Snopes, Clem Snide. The passage of time was marked with oven timer beeps and the completion of each cd.

I dozed a good deal, despite all efforts to the contrary. There's just no fighting huge doses of Benadryl. I received a few phone calls from friends which broke the monotony of the day. My boyfriend called and I told him about the Chick pamphlet I'd snagged for him. Turns out he already had a copy of "This Was Your Life." But he said he'd gladly take another. "It's a classic. Can't have too many of that one."

Each time the beeper sounded, a nurse approached me and adjusted my settings. She might talk to me if she sensed I would respond. Most of the time, I sat in silence. At one point, I noticed some conversation among the nurses that seemed conspiratorial. I knew immediately what was up. I removed my headphones and called to Colleen, the nurse who every week for the past year reported my platelet count to me. "So Colleen. What were my platelets up to today?" There was an audible hush in the room and I could hear Colleen's mind groan. "65,000. And no! You're not leaving! And yes! You will come back next week!"

65,000 is the highest number my platelets reached during this entire fiasco. They climbed to that number prior to my first Rituxan treatment. I can only attribute this astonishing jump (from 20,000 to 65,000 in one week) to a new homeopathic remedy I took several days prior to Rituxan day. Just as the Chick pamphlet blew a big raspberry into my morosity, the jump in platelets flipped a bird to all conventional treatments and suggested that the alternative was actually doing some good. But what poor timing, because here I sat with mouse protein running into my veins.

I resigned myself to continue the treatment despite an inner voice telling me to quit it. I resisted the treatment for so long. Once I charted my course for Rituxanland, I kept on the straight and narrow. I was willing to accept the consequences of my decision, hence the mental preparation for my potential death. So while the news of my higher than usual platelet count was a bit like The Supreme Being having a good laugh at my expense, I remained firm in my conviction to continue the Rituxan.

As well as preparing for my potential death, I had prepared for the possibility of remaining in the treatment room for eight hours that first day. This is how long the nurse told me the initial treatment would last. So it came as a surprise when the nurse - after silencing the final series of beeps - announced that I was finished for the day after only five.

"What?"

"You're all done."

"I...?"

"Unless you want to stick around."

"But, you told me the first treatment lasts eight hours."

"We tell everyone that just in case they have a reaction. If they have a reaction, we have to stop the Rituxan, treat with more Benadryl, then re-start the Rituxan. Depending on the severity of reactions, you could be here for eight hours."

"So....why did you say it wasn't safe for me to drive myself?"

"Because the Benadryl makes people sleepy. And if you had a reaction and we had to treat you with more Benadryl, you might be in too much of a stupor to drive yourself home."

"Oh."

"Are you disappointed?"

"No. Just surprised."

It was pretty anti-climactic, this not dying bit. I called my sister to let her know I could be picked up and proceeded to the waiting room for waiting.

I wasn't out of the woods just yet. The fatal reactions to Rituxan could occur up to 24 hours from the first treatment. But since I experienced no reactions whatsoever during the infusion, I went home thinking that my prospects for survival looked better.

Surprisingly, I had none of the night sweats, fever and chills that many people experience with Rituxan. I merely felt heavy from Benadryl. I slept a good deal that afternoon and evening and went to work the next day feeling only slightly out of it mentally. There was a tiny red dot on my left hand where the catheter had been. Otherwise, it was business as usual.

At 3:00 pm, I announced that I was out of the danger zone. 24 hours after my first infusion of Rituxan had ended, I was alive and kicking. I felt pretty happy about that.

Round 1 ended without much fanfare. The following week, I drove myself to the hematologist's office to initiate Round 2. Being superstitious, I carried all the same things with me, sat in exactly the same chair and braced myself for the unexpected - which is, after all, always lurking behind every corner.

On this day, I chose to listen to Lama Gyurme and Jean-Philippe Rykiel's "Lama's Chants," a somber but deeply moving recording of Tibetan Buddhist blessings. A nurse whom I'd never before encountered inserted the catheter, gratefully without episode. I witnessed in horror the way she consistently managed to "blow a vein" in the people sitting around me.

This would be a good time to mention the complexities of intravenous treatment. I have a vague understanding of the physiology involved in the process. But I do know this: as long as you are inserting needles for the purpose of removing things - like blood or fluid - you are not creating a significant amount of stress on the vein. But once you begin to push substances into the veins, then your veins begin to grow weary. The body is pretty resilient and can handle a good bit of all this insertion, withdrawal and shooting up. But eventually, veins collapse. And this becomes problematic for nurses whose job it is to insert, withdraw and shoot up, so to speak.

Then, there are people who receive so much chemotherapy over such a prolonged period of time that they live with a "port" under their skin all the time. This is some sort of device that affords quick and easy access to a vein without the use of a catheter. However, during my eight weeks of chemotherapy, I noted a couple of instances in which the port had moved, turned, become somehow difficult to access. Even though I could not imagine what their lives must be like, I felt an immense empathy for the folks with these ports.

Back to The Treatment Room and the nurse with faulty infusion skills.

Round 2 proceeded without incident. The chatty nurse who continuously blew veins in those around me came to withdraw the catheter from my hand. As she did so, it occurred to me to tell her to apply great pressure to my hand after the catheter was removed. But I thought, she's the professional. Why should I tell her how to do her job?

Because she didn't know how to do her job and because she did not apply a great amount of pressure to my hand after removing the catheter, my vein bled a good bit under the skin leaving a most remarkable bruise and welt. This damage was pretty minor - merely cosmetic for all intents and purposes. Still, considering the pretty little red mark I'd sported previously, this unnecessary blight was obnoxious to me.

A handful of folks re-appeared each week in The Treatment Room. We formed an unspoken alliance to endure and get well. I sketched a picture of my favorite ally -a woman in her late 60's. Her slate grey hair was short and always seemed to stand straight up. Punk rockers work very hard to achieve the same result as the one which occurred naturally on this woman's head. She wore large square glasses that obscured a good deal of her face. But her eyebrows were always dramatically arched above the rim of her glasses, even when she fell asleep. I adored her. We would look at each other from across the room and smile at one another. But we never spoke.

Each week, the side effects that presented me with the most challenges were extreme grogginess and an inability to focus mentally. I'd been toying with the idea of doing Bikram yoga prior to all this nonsense. I felt it might help move me out of the foggy zone and into a realm of clarity. I felt compelled to give it a shot.

Bikram yoga - or "hot yoga" - is an intense form of yoga in which the room is kept at 105 degrees (Fahrenheit). Participants embark upon a journey involving 26 postures which takes an hour and a half. Enduring the heat is a challenge in and of itself. Learning to master the postures is an ongoing process. I'm not sure whether it is because of the difficulty of the postures or sweating buckets, but after a Bikram session, I experienced a heightened relaxation, a deep physical awareness, supreme happiness, a more energetic body and greater mental agility. I became addicted and went as often as possible.

Meanwhile, I tapered my dose of prednisone each week as instructed by the hematologist while continuing with the Rituxan. I actually started looking forward to the treatments as this was a time in which I could permit myself to take care of myself, do only what I wanted to do, sleep if I wanted. The buzz kill was this: each week, my platelet count dropped lower and lower.

It was laughable: the Rituxan seemed to be making my condition worse. On top of the dramatic decline in my platelet population, I developed serious knee pain which soon prevented me from participating in hot yoga time.

I grew despondent and depressed. I bottomed out in the Treatment Room one day when I was told that my platelets numbered 6,000. As a reminder, let me state that the normal platelet range is anywhere from 150,000 to 450,000. It is possible to exist cautiously if one's platelets are at or above 30,000. If one's platelets fall below 10,000, then for all intents and purposes, one has no platelets.

The hematologist was out of the office on this day. This was the case more times than not. But the physician's assistant called her and spoke to her of my condition. Her response was this: "I'm taking it as a good sign that your platelets are dropping." According to her, I am a member of an elite sub-group of patients whose platelets actually decrease during the Rituxan treatments. Most patients' platelets go up during treatments. But several months down the road, they drop again. The hematologist said that six to eight weeks after my final treatment, my platelets, like all the others in this elite sub-group, should go up and remain up. I did not believe her.

I remember sobbing, quietly, but unabashedly that day in The Treatment Room. I made no attempt to hide my distress. I merely plugged myself in to my cd player and pretended that since I could no longer hear myself sniffling, no one else could hear me either. At one point I looked across the room and saw the lady with the arched eyebrows. There was a helpless look in her eye. She saw that I was suffering internally. She understood the struggle to maintain hope and dignity. She watched me slide into despair. And there was nothing she could do. She was the only person on the face of the planet that gave a damn about me in that moment. I saw it. And I greatly appreciated it. Because in the end, her light propelled me out of my darkness so that I could engage myself in thoughts of healing again.

I counted down the weeks until the final treatment, marking them off my calendar with the firm resolution to see this process through to its completion. On the day of my final treatment, I took a dozen doughnuts to the nurses in The Treatment Room. I made a farewell card thanking them for all they had done. I sat through my final treatment. And then I left. Another anti-climactic moment in a series of anti-climaxes.

I continued to experience severe knee pain which often spread into my entire back. I contacted my homeopathic doctor about this as well as the severe bouts of depression I'd begun to experience. She speculated that if we treat the depression and see positive results there, the platelets will likewise increase. It just made sense. So we initiated a period of trying different remedies to see what helped. I noticed a gradual improvement in my mental state and an increase in physical energy.

The hematologist wanted me to continue to have my platelets counted weekly. I obliged her for the first couple of weeks post-Rituxan. But when the platelet count remained below 10,000, I told my hematologist's receptionist to cancel all upcoming labs. I needed to take a break from the platelet counts. The weekly drama was making me crazy. I felt it served no purpose other than to make me feel completely out of control. I needed a vacation from ITP.

Eight weeks after my final Rituxan treatment, I had a follow-up visit with the hematologist. I never look forward to office visits with Dr. Blood. On this occasion, I imagined nothing she could say to me would be of any use. I made the familiar trek up the stairs that seemed to march me always and forever to my doom. I signed in. No Chick pamphlets today.

I had blood drawn. My weight was measured, my temperature and blood pressure taken. I waited in the examination room with absolutely no expectations whatsoever. I merely wanted this visit to be over and done so I could walk away from the entire process with a clean conscience. I'd done what the hematologist prescribed. It hadn't worked. How would she own up to the fact that she did not know how to treat this condition? Would she own up to this fact at all?

In the end, it didn't matter. Dr. Blood followed the medical canon for treating my condition. No one knows how to treat it. There was really no point at all in trying to hold her accountable for a treatment that did not work. I made the decision to pursue Rituxan fully cognizant of the risks, still believing it to be The Cure. There is no cure. This condition simply is. And there we are.

My platelet count was less than 10,000 on the day of my final visit with Dr. Blood. She entered the examination room stating that I wasn't doing what I was supposed to be doing. Which meant my platelets were still being murdered by my body. She informed me of my options: 1) Do nothing and see if complications arise. 2) Have my spleen removed. 3) Opt for another form of chemotherapy - an "old trick" that serves as a temporary fix. 4) Wait for the FDA to approve a new thrombopoietic drug which would stimulate platelet growth.

I chose option one.

Dr. Blood responded with a "that's perfectly reasonable," and a "you're a highly intelligent woman." Not at all the sort of response I'd been subjected to in the past. She told me that while internal bleeds could occur, they were rare. And that my chances of dyng from low platelets were less than my chances of dying in a car crash driving away from her office.

Dear Dr. Blood: It sure would have been nice for you to have expressed this to me a year ago. It would have been nice if you had recognized my intelligence when I attempted to get you to help me participate in a clinical trial for the aforementioned thrombopoietic drug. It would have been so much more useful if, when I chose to take Chinese herbs, you had said, "while internal bleeding can occur, it is rare" rather than "as long as you are willing to accept the potential catastrophic toxicity risk."

Dr. Blood told me it wasn't necessary to have weekly platelet counts. Once a month ought to be just fine. She had her receptionist schedule a lab visit once a month for the next three months. On the day of the third, another office visit is scheduled. I think I'll keep it just for kicks and grins. But I have no desire to entertain any treatment option Dr. Blood deems worthy of exploration.

Exactly one year after the initial diagnosis, my platelet count remains the same - less than 10,000. But several things have changed: I stopped drinking. I eat better. I exercise. I accept my impending mortality without wishing to hasten it. I love my life exactly as it is - even in its most fucked-upedness. I make my own decisions regarding how I wish to live my life and what I wish to do or have done to my body. And no one can convince me that they know any better than I do what course of action to take in my continued quest for health and healing.

I write this lengthy exposition with headphones on, a new cd in my portable cd player. Mando Saenz' "Bucket." Lush melodies, a rich voice, vibrant clarity of pitch, tone and lyrics....the lyrics, "Am I nowhere, close to going there, close to knowing how to be."

It was a long way around the block, but I'm glad to be home.

Fool Circle Part 4: My Salvation

I find it completely ironic that a dozen or so years ago I struggled with and suppressed the urge to kill myself. Not just for a day. And not just once a day. I dwelt in the land of self-destruction. I breathed poison instead of air. The Shadow of Death consumed me.

So when recent circumstances led me to confront the possibility of Death, you would think I might have - as the Lou Reed song says - "welcome(d) the chance to meet my maker and fly into the sun." This was not the case. Instead, I resisted the notion that death was a possibility.

For the record, resistance for the sake of resistance is a useless endeavor. The oppressive nature of Fear is never any fun. And I decided that even the risk of Death would be better than dwelling in the house of Fear. When I made up my mind to pursue the prescribed treatment of Rituxan, I did so fully and without reservation.

The morning of my first infusion, I made the necessary preparations for my departure from this planet. I packed the important things to have with me in my final hours: a portable cd player with headphones, the requisite death and dying cd's, my journal, my favorite pen, a good organic apple, some havarti cheese, a couple of ciabatah rolls, a jug of water, a lovely shawl brought back to me from Tibet by an old friend, a "magical" broach given to me by my daughter, a rosary from Chartres, and my puffy pink sweater: an artifact of my deceased marriage given to me by ex-husband guy. In a sense, I surrounded myself with as much beauty as I could carry with me into The Treatment Room and as many friends as I could carry without actually having people with me.

Like the biopsy, I felt I needed to undergo The Treatment alone. However, due to the unforeseeable side effects of the first infusion, the nurse told me it would be in my best interest to have a driver. I chose my sister for this task. She offered to stay with me, but I insisted on going it alone.

The hematologist's office is on the second floor of a fairly new medical facility which is a five minute drive from my home. For some reason, I never want to take the elevator there. On this fine morning I climbed the stairs I've climbed weekly for a year, my arms laden with the gifts of relationships in various stages of decay or re-birth.

I walked into the lobby and signed my name on the clipboard queue. I turned to find a space in the waiting room for waiting. I zeroed in on my seat. Laying on the table next to it, larger than life, was one of those Chick pamphlets - badly drawn comics with morose plot lines designed to compel its readers to turn from sin to salvation. The title of this particular pamphlet leapt off the page and into my mind at dizzying speed: "This Was Your Life."

Moments like these cause me to believe in a Supreme Being. Not your run of the mill white-haired guy in the sky, rather a trickster with a perverse sense of humor - one who recognizes fully the way in which I immersed myself in morbidity and who would be amused by throwing an obnoxious Chic pamphlet at me on this particular day.

I picked tucked the pamphlet into my bag. In the event that I should survive my first Rituxan treatment, I would give this pamphlet to my boyfriend. He collects them. Has a whole shelf full. He finds them greatly amusing. Until I met him, I found them greatly offensive and was usually outraged to find them lying in public places. Through his amused eyes, I have learned amusement.

The nurse called my name. Like most official types, healthcare practitioners use my legal name rather than the nickname everyone who actually knows me uses. This formality is always disconcerting. And the sound of that name pierces my heart in moments of extreme anxiety.

I rose, gathered my belongings, and walked back to the little room that is not quite a room - the area where my weight is measured, my blood drawn, my blood pressure and body temperature taken. Then, I walked the long corridor back to The Treatment Room, all the while thinking of the film "Dead Man Walking." Would the chill of Rituxan feel similar to the chill of the three-drug concoction infused into the bodies of death row inmates? One cannot help but think these thoughts.

The Treatment Room looked like a beauty parlor from a Fellini film: your standard issue institutional green walls lined with chairs inhabited by people hooked up to IV's rather than hairdryers. Once told to pick my spot, I wondered if the laws of Feng Shui applied to chemotherapy placement. Would the direction I faced enable efficient healing or cause me to die? I chose a spot that faced South, a row of windows facing West to my right. It seemed somehow appropriate to face, as near as possible, the direction of the setting sun.

Before the infusion of Rituxan, it was necessary for the nurse to administer the pre-treatment of Tylenol - taken orally - and Benadryl- administered intravenously. This is done to counteract the potential reactions to mouse protein: fever, chills, hives, swelling of the throat, to name a few of the milder ones. I downed the Tylenol with water and braced myself for the dreaded insertion of The Catheter.

The idea of having Rituxan flowing into my bloodstream was less objectionable to me than the thought of having a catheter in my arm for eight hours. I simply could not wrap my brain around this idea. So I stopped trying and resolved to deal with it in the moment.

The catheter was inserted via needle into a vein in my left hand. I had all my gear conveniently piled on a table to my right. It really amazes me how quickly the body adapts to discomfort. The initial prick was uncomfortable. The sensation of a catheter was at first awkward. But soon, I became relatively unaware of its presence. Instead, I became aware of the chill sensation of this foreign substance entering my blood.

Upon the administration of Benadryl, I thought, 'This is it.' Now that the process was begun, I had to select my music carefully. I needed something soothing, but not sad. Comforting but not sappy. Inspiring but not upbeat. Richard Buckner. "Devotion and Doubt." The cd that, over the years, helped me survive all manner of Hell. It is one of my oldest and dearest friends. I loaded up the cd player and hit play, adjusting the volume so that the sound of the songs superceded the noise of my brain.

The slow tempo, the low voice, the mournful lyrics, the delicate guitar flowed into my veins simultaneously with the fog-inducing benadryl. I was determined to remain conscious. Yet the soft sweet lull of Buckner's voice drug me down deep, only to be awakened by short, staccato, high-pitched sounds emitted from the machine hooked to my hand.

The Benadryl phase was complete. Time for the real deal.

I kept my headphones on but lowered the volume slightly in case the nurse had any instructions for me. Sensing the internal preparations I was making for my own death, she made no small talk but simply played her part in the melodrama. She switched out one bag formerly containing fluid for another full of fluid. She punched a couple of buttons on the device next to me as if establishing the settings on a microwave, asked if I needed anything and left me alone with my music. My salvation.

Fool Circle Part 3: A Major Arc

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.

Fool Circle Part 2: A Waiting Diagnosis

From a doctor's perspective, I am not a good patient. I question everything a doctor tells me ad nauseum. I usually argue with a doctor about prescribed treatments. Often, I choose not to do what the doctor says. I typically am suspicious of doctors' motives, so when I find one that I feel I can trust, I stick with them for life - theirs or mine.

In the beginning, I did not trust my hematologist completely. But because of this strange and unknown factor affecting my body, I was willing to listen to her. At my first appointment, several tubes of blood were drawn from my arm. A nurse ushered me into an examination room where she took the standard stats: body temperature, blood pressure, pulse rate. And then she instructed me to undress and put on a paper gown, open in the back. She left me alone to wait for the doctor. And this is the most uncomfortable moment: being undressed, cold and apprehensive in a sterile and alien environment.

A physician's assistant examined me and spoke to me in soothing tones. I was beginning to feel at ease when the hematologist came in. She had a different air than the physician's assistant: one of brisk efficiency. I tried very hard to admire her for her accomplishment of becoming a specialist in a male-dominated field. I wanted very much to like her. But she was cold and unapproachable. She spat out her assessment of the situation and what I needed to do about it at radid-fire speed. I tried hard to absorb it all as quickly as it was thrown at me.

The reduced platelet count was, in her estimation, the result of a condition called Idiopathic Thrombopoetic Purpura - ITP for short. This is an auto-immune condition - a condition in which the body attacks itself. In my case, my anti-bodies - those nice little mechanisms of defense which clean your blood of any invading substance - were attaching themselves to my platelets as if they were invading substances. Thus marked for destruction, the platelets get absorbed by my spleen where they disappear forever. As the word "idiopathic" implies, no one understands how or why this happens. Likewise, no one really knows what to do to reverse this trend. There are canonized treatment options which are successful to varying degrees. But there's no surefire cure.

The hematologist prescribed a high dose of the steroid prednisone. This is the first line of treatment used across the board whenever a patient is diagnosed with ITP. The point of taking prednisone is to suppress the immune system so it won't interfere with the existence of platelets.

So I took this high dose of prednisone. The side effects of steroids are undeniable. Everyone is affected differently. But I will say this, the phenomenon of "roid rage" is very real. Most of the time, I felt an undercurrent of anger in me which was very much like expecting the Incredible Hulk to burst out of my skin at any moment and wreak havoc.

After several weeks of steroids and weekly platelet counts, the hematologist sat down with me and in a similar rapid-fire way informed me that "we're going to schedule a bone marrow biopsy. You need to have three immunizations (she writes these down). We're looking at having your spleen removed."

The panic and questions arose simultaneously. Eventually I gained my composure enough to argue and question. A splenectomy (the second line of treatment) is only 50% effective in sending an ITP patient into remission. The potential infections one can acquire without a spleen sounded more life-threatening than the low platelet count. I agreed to the bone marrow biopsy for the sake of ruling out any other underlying causes (like leukemia). But I held my tongue about the splenectomy.

I decided I wanted to be a tough guy and go by myself to my biopsy. I practiced a form of meditation that I felt would come to my aid should I begin to feel frightened. I felt a nervous excitement such as one might feel at the start of a great adventure until I got on the table in the examination room. And then, a cold hard fear set in. I was living - in my mind - a dead man walking scenario.

I expected something like a hospital bed, all white with sheets and pillows that I could cling to. But I was placed belly down on a paper-covered vinyl examination table. I didn't even pull my pants all the way down. 'Breathe,' I thought, 'just breathe.' I focused on the air entering my lungs and the carbon dioxide leaving them. In, out, in out.

The hematologist made remarks about cars in the parking lot below, about men with leaf blowers there too. She asked questions about my home, my family. She tried to be amiable as she sterilized my ass cheek and numbed it. And then she plunged the long thin rod - an aspirator - into my flesh, down through my hip and directly into the marrow of my thigh bone.

The pain was brief. But it was the most excruciating sensation I have ever known. Though over as quickly as it began, it sent waves of fear and panic through my body which lingered and maintained the pain. I fought back tears. I was confused. My body and mind were in a form of shock.

The hematologist was with me for about ten minutes. Afterwards, the kind attending nurse lingered to make sure I was alright. She had me lay on my back to put pressure on the wound. She left me alone on the paper-covered vinyl for several minutes. I used this time to try and compose myself. I returned to my breath - in, out, in out.

The nurse returned to see how I was doing. I asked if I could see the piece of marrow that had just been removed from my body. She held up a jar filled with liquid. A tiny spongey mass floated in it. I marveled at the perfection of this substance, this tiny piece of me. It looked like a universe in and of itself. I suddenly felt very protective of it. What will happen to it now? It will be sent to some lab where some anonymous technician will examine it, looking for clues to solve my medical mystery. How could I be sure that the bone marrow taken from my body would be labeled with my name? How could I be sure that the technicians would match my set of lab results with my name? I wanted to accompany my marrow along its journey to be sure it reached the appropriate destination and I was given the correct information. In the end, I submitted myself to a process over which I had no control and trusted that everything would happen exactly as it should.

I slowly lowered myself from the table and picked up my bag to leave. The nurse told me to be sure and take a very long walk this afternoon to avoid potential soreness. I walked past the hematologist's office and said, "thanks, doc." She said, "yes sir! Be sure and take a long walk."

The hematologist had just been up close and personal with my ass. Yet she called me 'sir?' I was still in shock and not completely able to feel indignant at that point. But after the fact I realized that I am not a human being to my hematologist. I am a series of numbers and statistics. I am a problem waiting to be solved. It was at this point that my hematologist ceased having a name. I dubbed her "Dr. Blood."

I did indeed take a long walk the afternoon of my biopsy. I walked to an old cemetary which I used to visit as a child. Back then, I pretended it was haunted and terrified my friends. As a teenager, I found a strange comfort wandering around the ancient graves: some dating back to the eighteenth century. A particular calm overtook me. I experienced this again after my biopsy. The September sky was a brilliant blue and the sun seemed to burst into gold shards across it. In this moment, I was alive and well. And I felt a particular pride in having survived a bone marrow biopsy all by myself.

Fool Circle: A Minor Arc

The needle enters my vein. I turn my head away. This procedure has been performed once a week, at least, for the past year. Yet I still have not found the courage to watch the needle penetrate my flesh.

I have a great deal of difficulty letting go of my blood. Maybe this is because I am a control freak. But I feel very protective of my body and all that dwells within it. So it has been stressful, to say the least, having blood samples taken routinely.

This begs the question, why submit to a practice which feels like an assault? My response is, this is a good question.

Over a year ago, I found tiny red dots on my feet and ankles. While their appearance confused me, I shrugged the phenomenon off as something I would ask my family doctor about next time I paid him a visit. These tiny dots multiplied and climbed up my lower calves. I watched them with curiousity and a vague anxiety.

A couple of months marched by and one morning I awoke with bruises on my forearms - a straight line of dark spots along the inner arm. I could think of nothing I'd done to provoke this physiological manifestation. I made an appointment to see my family doctor the Friday before Heavy Rebel Weekender - a big rock 'n' roll festival that has become my 4th of July tradition.

Heavy Rebel is about the most fun one can pack into a weekend. It is a raucous, loud, jubilant time that comes complete with tossing beer cans at one's favorite bands and incidentally getting pelted in the head a few times in the process. And mud wrasslin'.

The mud pit is open to anyone - male, female, young, old. It is a rambunctious free-for-all in good ol' North Carolina mud. When one goes in, one can expect full body tackles, having one's legs yanked out from under them and lots of cuts and bruises. It's all part of the fun.

I decided on this particular Heavy Rebel weekend to avoid the mud pit. This was difficult as participants from previous years taunted me, attempting to provoke me into the mayhem. I restrained myself with great difficulty thinking it wise to discover the cause of my bruising. In retrospect, this was good thinking on my part. Though I must say, it was impossible to avoid being hit upside the noggin by beer cans when the 7 Shot Screamers played.

On the Monday after Heavy Rebel, I visited my family doctor. He asked questions, examined me, ordered a blood sample and sent me on my way saying he'd be in touch as soon as he found something wrong with me. That afternoon, his nurse called. Trying to restrain the panic in her voice, she left a voicemail asking me to stop by the office as soon as possible so they could get another blood sample. I asked what the problem was and the nurse said that my platelet count was extremely low. They just wanted to make sure they'd gotten an accurate count, she said.

"How low is low?" I asked.

"9,000," she said. "The normal range is 150,000 to 450,000."

"Oh. Good."

I stopped by the next day and more blood was extracted. The nurse called that afternoon and said my platelet count appeared to be within the normal range, but to watch my bruising and to avoid bumping my head.

Right.

In the meanwhile, I began to do my own medical research - never a good idea for a compulsive worrier such as myself. I discovered the function of platelets is to help in the clotting process. Having too few platelets leaves a body susceptible to bleeding more freely. This is usually not to one's advantage.

Upon researching the possible causes of a low platelet count, I ran across the dreaded "leukemia" and "HIV." And that was enough to propel an already active imagination into overdrive.

As worrisome as the initial platelet count had been, I decided to trust the nurse who had told me that my count "appeared to be within the normal range." There must have been a glitch in the system of drawing blood and counting platelets. I could rest assured nothing was seriously wrong with me.

But what about the bruises and the red dots on my legs?

A couple of weeks after my second platelet count, my period started. I had an appointment with a prospective employer in the morning. I felt oddly weak due to excessive blood loss. Driving home from my appointment, I bled through all feminine hygiene products, clothes and seat cusion. It was a bit terrifying to see this much blood rushing out of me. So I called my doctor. He ordered me to proceed to a seperate lab for another blood count. I did so immediately.

The next day, I received a call from my doctor. He was concerned about my low platelet count (9,000) and arranged for me to see a hematologist. I had to wait a week for my appointment, which left plenty of time to elevate my general anxiety level.