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.
No comments:
Post a Comment