[8-09-08] Stanford BMT Appt.

[10:06am]
     Now to say a few words about the Friday appointment: crazy, overwhelming, emotionally draining, and fascinating. At first, I thought that the BMT was a pretty big deal. Then, with a bit more research, I realized that it was a really big deal. Now, after this last appointment, I realize that it is a tremendously HUGE and immense life-changing ordeal!
     I'll begin with the day before the appointment...

     After my final presentation, and my sister's kind words on my last blog entry, I was struck with the desire to hang out with mi familia. It made sense: I had to work on my final term paper, but we would all be heading to Stanford on Friday, so I could just return to Berkeley then. A quick, one day vacation.
     It was really awesome that Jen picked me up -- we basically talked the whole drive to Santa Cruz about all sorts of things. It was fun. Then, upon hearing that I was in the car, Dan called and asked Jen: "Yes, but what about beer? Should I get beer?" Dan's a guuuuud boooi. :)
     When we arrived, not only was beer on the agenda, I found Corralitos Meat Market sausages and hanging tender on the kitchen counter. I was truly stoked! I know it must mean I'm simple or something, but this formula will ALWAYS work: beer + meat = happy. It has never failed. Hmm, now that I think about it, in many ways, I am simple-folk. I like that. Makes things easier.
     Anyways, to my surprise, Jen said: "Why don't you guys go out and get a pitcher or something?" A rare recommendation. Dutifully, we obliged her. When I commented to Dan about how unique this this explicit (with plural, implied) pitcher permission was, he commented: "Well, it's not like it took having terminal cancer to get her to give it." We laughed. [Note to the casual observer: Dan loves Jen more than the world, and he is not belittling my condition. He has an ironic sense of humor that spits in face of convention and mocks the notion of "politically correct." I love it -- he makes me laugh more than anyone else.]
     After a few pitchers, Dan commented about how he thought that I wouldn't be able to drink after my first ICE treatment. I expected the same. He then said: "Well, I'm glad we were able to pull this one from the Devil's teeth." That's such a great expression. We then proceeded to get drunk.

     That night, for the first time, I experienced the dreadful "neupogen bone pain" that I've heard so much about. It was so annoying! When I stood up, my right knee felt better. The *instant* I lied down, it started to hurt, internally. It made sleep impossible. So strange.

     The next day, Barbara, Jen and I got in the car and headed to Stanford. The first appointment, at 11:30am, was with the social worker.

     11:30am: The Social Worker.
     She was a friendly young woman with an upbeat and cheery disposition. Very disarming. She asked some simple questions at first, but began to probe deeper until Barbara (very wisely) excused herself to allow us to have a private discussion. It was then that she became a savage: tearing through the meat of my emotional and psychological past until I remained little more than a stack of discarded bones on the linoleum floor. She wanted every last detail. Her notes scribbled my most intimate fears, weakest moments, and shame. [I understand, though. She was nice, and she needed to assess my psychological durability.] When Jen and Barbara returned, I was visibly shaken.
     She also talked about the Leukemia and Lymphoma Society. Apparently, they are willing to re-reimburse up to $500 for travel and parking expenses to Stanford. I found it profoundly strange! I'm not supposed to be on the receiving end of that charity!! Ever since my diagnosis, I made it a routine habit to deposit all of my available quarters into those little "quarter-collecting" posters with a picture of a kid on it. I'm not that kid!! Yet more irony. At the Korean BBQ place that I frequent, my spicy chicken would cost exactly $6.50. That means, each time, I spend $7.00 and deposit two quarters into the poster. Next time, I'm going to spend $6.00, and pay for the remainder with two quarters out of the poster. I mean, at this point, it seems sorta silly to put those quarters in the cardboard -- kinda like me trying to deduct donations to the "Austin Spicy Chicken Charity" on my tax return. Hmm, now that I think about it, for each trip to Stanford the LLS buys me a spicy chicken. Nice!

     1:30pm: The Doctor.
     There were four things that I wanted to hear from the doctor: 1> Radiation was part of the game-plan, 2> Event-free-survival was around Northwestern's 80%, 3> that Stanford was undoubtedly superior to everyone else in the whole world for the treatment of Hodgkin's lymphoma, and 4> Whatever questions Barbara asked, the doctor would be able to handle. She performed with flying colors. I especially liked the part where Barbara handed her the Northwestern study. She immersed herself into the details of the study, noted the findings, and commented on them. She kept the study after the appointment was over. I like having an academic (assistant professor) for a doctor.
     Then, the doctor spent some more time detailing the game-plan. I'll save the details for tomorrow's post. Nevertheless, she wanted to stress that it was going to be HARD! I'll be covered with mouth-sores, unable to eat for a time, my GI tract will turn to mush, diarrhea, constipation, vomiting, pain, infertility, 6-9months recovery, etc, etc, etc... It's laughable that I thought, even for the slightest moment, that school was even a remote possibility through all of this. Indeed, when my school counselors learn of the BMT, they ask: "So, will you be taking a reduced course load through all of this?" They had no idea. And apparently, neither did I.
     The good thing, is that we were all satisfied that Stanford BMT was a damn good place to be. So, we won't be needing to go to Northwestern.

     3:00pm: The Nurse.
     The last appointment was with the nurse scheduler/liason. Her role was to facilitate communications and scheduling between myself, my local oncologist/radiologist, and Stanford BMT. She handed me a *huge* folder with a copy of the "Autologous BMT Patient Guide," and was positively thrilled when I promptly told her that I already read the whole thing online. That made her job easier. So, instead of talking about what I already knew, I tried to spend some time convincing her to be highly aggressive (low interval) between treatments. In and out: I want no period of time to exist where I go for more than two weeks without chemo or radiation. Two steps forward, one step back. Not vice versa. I did my best, but it looks like there might be a period of 3-4 weeks with no treatment.

     Then things went sour.

     She began to talk about some required tests that needed to be performed before I be admitted inpatient.

"There's a pulmonary function test... that's easy. Then there's the MUGA scan... that's relatively easy..."

I knew exactly what she was getting at, and I didn't like it one bit. At this point, the color drained from my face, and I could feel my pulse jump. My palms began to sweat, and I felt that "fight-or-flight" response. I remember at being amazed at my drastic physiological response to something that had not yet been said.

"The pet-CT scan... you're familiar with that. Also pretty easy..."

At that point, I wanted to choke her. Anything to keep her from saying IT. I was irrationally angry! I couldn't believe it! I don't get angry! [Note: I would like to apologize to the nurse for thinking such thoughts. Let it be known that I would never do anything like that. I have the greatest respect for her profession, I appreciate what she is doing for me, and I respect and like her as a person.] I was just regressing to a little raccoon that had been trapped into a corner. It was instinctive reaction.

"And last, there's the bone marrow biopsy. That's hard."

For the sake of truth and journalistic integrity, I have to further document my feelings regarding those last few words. I was fucking terrified. Yes, that adjective is absolutely mandatory for the precision of that statement. If I were in a court of law, and I was asked "how I felt" in front of Grandmother and my wonderful nieces, I would say: "I was fucking terrified." The omission of that critical adjective would be perjury.

     I think that was the first time in my life that I felt fear. I have never, past the age of 7 or so, been so afraid of physical pain that I was pushed to tears. When I was in the office, my eyes were watery and I was actually trying not to cry. A strange feeling. Even now, the fear is so great that I find my eyes starting to glisten with just the recount of this memory. To put this in perspective, I cry an average of about two tears every three years. Granted, this year has been especially tough -- so far I count about 3 or 4 tears in the past six months.

     I think I've sufficiently established that the bone marrow biopsy is a painful procedure. Nevertheless, for my own personal catharsis, I will continue to elaborate.

     The first time you get a bone marrow biopsy, it is just a necessary procedure. You sign the form, and it gets done without any drama. This is because the nurses know that you have no idea what to expect. The second time you get a bone marrow biopsy, there is a hushed and formal tension about the office. The nurses know that you have received one before, and they know that you know what you are about to be subjected to. That changes things. Is it pity the nurses feel? You get your vitals and bloodwork: "I see you have a biopsy today... Good luck." You get escorted to the doctor's office by another nurse. She looks at your chart and gives you a sympathetic smile. When the doctor is finished talking, he looks down, and with a sad and reluctant tone, says: "It's time for your biopsy." As if kicking puppies were a necessary part to successful oncology. After the procedure is finished, the nurse tries to make small talk by asking the ridiculous question: "Was it easier knowing what to expect? Or harder?" And lastly, the nurse who originally escorted me into the office asks, "How do you feel now that it's over?" The second time is far different than the first.
     However, my first biopsy wasn't all that bad. Yes, it was excruciating, but it was nothing like the second. Perhaps it was because he couldn't get through the bone on the first try, and had to try a different area. I do have thick bones. I really don't know why the second time was so much worse. Maybe other cancer patients usually have an easier time with the biopsy. I mean, I've never seen anyone complain this much about a bone marrow biopsy before. Frankly, I think it is absolutely unethical to subject patients to that amount of enduring psychological trauma. Yes, I think we can all agree I'm somewhat traumatized.
     I remember the procedure and the pain. I remember my eyes leaking for some reason... they don't do that. I wasn't crying, I couldn't cry -- they were just leaking (2 of 4 tears for the year right there). For the first biopsy, I made the occasional squeaks or grunting sounds. This time, sound was not possible. I remember moments where there was flashes of white. Then I started to vibrate; not shake... vibrate. I felt like an animal at the butcher's going into shock. I remember the nurse putting a comforting hand on my shoulder to ease the trembling. She will never, ever, be able to comprehend how much that meant to me. I am overwhelmed with gratitude for that, even now. This was not a friend, family, or loved one: this was a nurse, a paid employee, who simply conveyed through physical touch, "I know this sucks for you. There, there." She became a permanent friend right then and there.
     After it was over, I felt an overwhelming sense of relief and happiness. I was giddy. "Without suffering, there is no happiness." I remember saying to the nurse, "That wasn't so bad." I really have no idea why I said that. Maybe I was trying to convince myself that it wasn't. Maybe I thought that if I did not scream, then it wasn't a 10 on the pain scale. I didn't scream, and I was proud of that. Regardless, the nurse have me a serious look and said, "No, that looked pretty bad."

     I don't think I can handle that again. I need to find a doctor who will do a biopsy with morphine, fentanyl, pre-sedation or all of the above. I will go to a ridiculous extent to prevent that sort of pain again.

     Back to Stanford BMT. After the nurse mentioned the biopsy, and I tried to argue that "I just got one a week ago," I remember the visibly angry or outraged look on my sister's face. Amidst all the emotion, I remember feeling a lot of love for my sister right there.

     I'm drained. I'll write more about the day tomorrow.