Strange journeys, and slow. Occasionally a random tinkly arpeggio penetrates the thick barrier of wet felt, sweater pill, and static electricity that surrounds my head, cakes my eardrums, and turns my brain into the kind of crumbly sludge that not even a six year old would want to sled in. I look up to identify its source, and find that it is coming from a little yellow fish. There must be a camera trained on a fish tank somewhere, and when a DVD ends, this is where the tuner defaults. Was somebody watching a movie?
I have been in the hospital for, oh, about four nights I guess? But I certainly can’t figure out why everyone else seems so sure about it. After two sleepless nights at the hotel of belly pain, one of them involving vomissements and copious libations of sweat onto my pillow and sheets, it was time to stop pretending that I was going to make it through this without being hospitalized.
While I was already on quite incredible numbers of prophylactic anti-badstuff, when I got in they put me on even more. So now I am on vancomycin, fluconazole, levaquin, acyclovir, meropenem, cephalexin, cllindamycin skin cream, and chlorhexidine mouthwash! If you don’t immediately have a reaction to those two words next to each other, don’t worry about it. And I STILL have had a fever for days now. Everything’s just out of whack, and regaining its equilibrium is slow. They’ve even got me on IV nutrition, which is a trip. I can feel my guts going “wait a minute, no, no, no, you’ve got it ALL wrong, this stuff is supposed to be on THAT side!” It is easy to point to the drugs as causing the problem (“Hey Ahmet! All these American Hummers hangin around here, eh, you think they are really here lookin out for our best interest? Cause I ain’t so sure all of a sudden.”), but in my case, the peacekeepers really are the good guys, and are doing their job, and are going to win, with the help of the locals, who have started to rally. Tumor markers are in the normal range. My white counts are no longer dropping, and are expected to be back on their daily doubling curve by tomorrow. Platelet and red cell infusions have also sped the process, and further complicated filling out future health-related paperwork.
I was put on oxycodone as needed, and then a morpine drip, and then a morphine PCA (patient-controlled administration: the famous button!), and then a fentanyl PCA, which I had to ask them to turn down, because every time I would hit it I would wake up on another planet. I have been having great little nonsensical hallucinations, though. 10:00! Well, that’s when we cigar smoking three-piece-suit wearing railroad tycoons take our mid-morning nap, now isn’t it ol’chap? Off to the University of Chicago it is! Chicago or bust!
I don’t feel like I sleep much, but surely I do, as there is no other way to account for the time. Reading gets done at about a quarter of a page a day. Movies are best when they involve little dialogue, because there is nothing my brain does worse these days than decoding a bunch of people screaming at each other caught on poor recording equipment and played through tiny speakers on the other side of the room. The narcotics dictate a schedule of their own, and that combined with my recent severe drop in hearing acuity means that things are edgy – I sometimes have no warning when a nurse or my mother is going to do something, and I jump out of my skin in fright. I have to tell all my nurses and doctors that they have to speak slowly and clearly if then want to be understood, but they all forget anyway. I can’t really listen to my own music, because I fall asleep when I put it on, and then am awoken disorented and startled when the theme changes. Phone conversation is equally difficult, so I apologize if you’ve caught me ignoring your calls. I am not often in a communicative mental state, and even when I am, the effort to decode what you are saying and generate phrases of my own can literally put me out of breath. But this will all pass, and soon. And then I’ll do it again!
Wednesday, May 30, 2007
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13 comments:
Dear Josh,
Thank you for posting even though you are turning inside out and upside down. It gives me great solace to hear from you. I think about you a lot and have been wondering what was going on. Since you hadn't posted for a while I had a feeling you were having a really tough time. I'm relieved you can keep the end of all this in sight in the midst of the madness of it. I love you very much.
Megan
It is in sight...getting closer every minute- There goes another moment, its closer still...stay strong. We are thinking about you- and Mom and Dad,too-
Steven
Josh,
I've been anxiously checking for another posting from you each morning before I check my email, and now I understand the wait. Thank you so very much for the incredible effort it took for you to put into words where you've been lately. When this is all behind you, and after the celebrations that will be heard in all those planets you've been visiting, I will urge you to put these postings into a form that others can read, families and friends of other cancer patients, and doctors, for whom it should be required reading!
In the meantime, I send you a bumpercrop (you're still in Indiana, right?) of blessings.
By the way, you're wrong about the "Hoosier" title. You're just not saying it right. I'll teach you when I see you.
Love,
Melissa (a Hoosier)
It struck me you might now be able to understand where Jim Morrison was coming from. Powerful post. your lovin' dad.
So amazing with everything going on, that you still find time for those of us who are not there so we can stay in touch. Your strength is mind boggling.
We are keeping all of you in prayer here at home.
Kathy and Jim Warner
I too check your blog every day and was becoming quite worried when I saw no new postings. You have a lot of courage and are so strong-- these traits will inevitably get you through these low times. Josh, we are all here with you, some far, some near, but we are all here listening, sending love and sending well wishes.
Love, Cousin Jen
After reading though your blog I've found out what your real problem is, you haven't accepted Jesus Christ into your heart. Jesus' healing power is way better than all those chemo drugs, rivaling the carbapenems for coverage, with a cost far less than even chloramphenicol. Reported side effects are happiness and elation.
I think Jim is on to something. I read a recent article in the Christian Science Monitor where they proved that prayer was much better at killing germs than Fancy Science.
SUPERVIVERE
Every day now I drive by the Cancer Survivor’s Park, and every day I have two very different reactions to that word, “survivor.” One is the immediate response: We are going to get through this and have a life, a long one, together. And the other response is my more usual longrange reaction. Ever since about twenty years ago when someone said to me: “Why, you are a cancer survivor! Congratulations!” I have wrankled at the term, “survivor.” To me, it has a bad ring to it, as if cliffhanging, or being able to limp off after a bad fall. And as if I personally was responsible for “pulling through” a hard time. During that period, my own living never seemed to be my own doing, anyway. Science was at work, not me. After all, had I enough control to be congratulated as a “survivor,” I never would have had the cancer in the first place! The reality was that totally committed altruistic strangers took over my body, just as they are for Joshua, and over time removed the cancer. I never felt that I could take any responsibility for still being alive. And truly, I never believed I would die, so the idea of “surviving” always seemed like a plastic medal. But, passing the Cancer Survivor’s Park every day on the way to the hospital with Josh, or to visit him there, I feel a different yank. Joshua is so incredibly brave, that it does feel like he deserves a medal.
But I still don’t like the word, it still wrankles me, so I looked it up and found the original latin:
SUPERVIVERE
Super: over, beyond, above, on the top (of), besides, in addition to
Vivere: to live
So: beyond living, or living above and beyond, above life, on top of life, besides life, in addition to life. In other words, a highly amplified state of being. Well, that certainly fits.
SUPERVIVERE, superliving. Which is just the right definition for people who have lived through cancer, and for what I expect Josh will feel like once again, after he bursts out from this dense cycle of destruction and healing.
So, I’m on with SUPERVIVERE, since this is what we’re really up to.
Mom
Dear Josh,
I'm so grateful for the updates on your life experience. The way you share is amazing. I am thinking of you often and sending healing love your way.
Love always, Tracy Trumbly
I confess to a perverse relationship to your blog. Seeing no new post in - what? - three days? - I feel like the impatient reader of a newly discovered and compelling author. Although, you send long postcards from an excursion to a reality I vehemently hope never to personally experience, I am hungry for the next chapter.
Perverse, I know, but I am filling some need of my own. And anticipating your eventual full, triumphant recovery. And all that will follow from that. All our lives are linked in sometimes mysterious and powerful ways.
Sherry
Dear Josh,
I know you have been going through hard times but are now on the way to recovery. Both Susan and I send our love, continue to be strong.
A bientot,
Jean-Pierre
Josh,
From your last blog it seems to me you have the right insight: Take time off from the stressful driven life of the medical student to rebuild your immune system by learning how to relax and eat correctly. Take advice from knowledgeable sources such as Dr. Andrew Weil, the founder of integrative medicine. Keep blogging and report on your progress.
Best regards,
Rachel
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