November 3, 2001: Long Haul
sorry it's been so long since my last note--my stay in the hospital for dehydration and other chemo-related side-effects (nasty mouth sores, endless vomiting, etc.) was a bit longer and more intense than we hoped, and the week since my discharge has been equally trying. So, fair to say I haven't been looking at the computer much.
Regardless, I've been very aware of your thoughts and prayers. Thanks.
So, here's a brief update.
I was released a week ago today (Sat) after 11 unplanned days in the hospital. Of those days, about half are "lost"--they put me so many different drugs at once that at least 5 days can't be remembered at all. The combination of a morphine drip and a marijuana-based anti-nausea drug made me both spacey and paranoid--and apparently quite entertaining. By the end of last week all the really dangerous side effects (save vomitting) were mostly passed, so they felt safe to send me home on TPN (Total Parental Nutrition), an IV feeding thing to make sure I don't starve to death while I go through the post-chemo/transplant churns. When I left it had been nearly 3 weeks since i'd actually eaten solid food and kept it down, and liquids weren't doing much better, so they started me on it in the hospital and I continue here at home. To that end, Sheri is now a trained IV nurse, doing everything with our little backpack IV pump that I have to wear overnight but actually access my IV mediport itself--that's still the weekly realm of real nurses. But she hooks me up, gets the bag together and inserts the "extras" into it (stuff like specific vitimans and a few drugs) via hypodermic, and then sets the pump and away we go. I have a little buddy that looks like a backpack to carry around from 8-8 each night, but it's relatively quiet lying by the bed, and isn't much of a nuisance. For my other needs, Sheri has also more than risen to the challenge. She took this week off to look after me--the first time she's had to since I got sick--and has been both patient and gentle company. I don't know what I'd do without her....
The basic chemo side-effects--especially the nausea--have continued, unfortunately, since my release. I confess that it's been hard not to despair in the face of endless nausea and 6-12 "episodes" a day (along with the sore stomach and throat), but I can also confess that it's forced me somewhere close to St. Paul's exortation to "pray without ceasing" and also given me consistent reminders of those who suffer much, much worse. On Thursday at UPenn's cancer center I watched a young couple (the guy was maybe a few years younger than me, the woman, who was the patient, was maybe Sheri's age) wait for their appointment--clearly their first--with the same depth of fear and apprehension that I remember so well from late March. It was also clear that seeing me and others like me--bald, follicle-less and in my case on Thursday afternoon, ghostly pale and never without my little green puke bucket--freaked them out. I wished I could go over and offer them something of hope--but instead just prayed and cried for them, and asked God to give them the same sense of peace he has, overall, given me. They are one more symbol for me.... There is so much suffering--and so many questions about it. The only thing that makes sense is the notion of the incarnation--that God took our frailty upon himself--that he shares it with us, that we are never alone. Without that, it's only despair.
Enough parenthetical wanderings. Good news is near: the last couple of days have proven hopeful. On Thursday, at my UPenn appointment, my transplant oncologist (Dr. Luger) took me off my entire cocktail of antibiotics (which include CIPRO, the annti-anthrax drug--DON'T take it for fun: it's NASTY!). She took me off the drugs for two reasons: first, my blood counts are ALREADY back to normal ranges (she called them "beautiful"), something that looks to be about 2 weeks ahead of schedule, and second, because we were collectively convinced that they were contributing to my on-going and unending nausea. Yesterday and this morning seem to confirm that hunch, and I can say I'm feeling moderately human for the first time in nearly a month. (Insert appropriate religious thanksgiving here!)
So, there's light at the tunnel's end.
Basically, I'm told I have to think in terms of weeks and not days, and understand that it's going to take a while before my body has recovered from the chemo of Oct 10. And I have to keep reminding myself that all of this is NOT cancer, but collateral damage, and it CAN be endured. And, like I said, the last few days have been encouraging toward that end--I've even been able to eat some small bits of solid food. Pray that continues, and that I stay safe from other side effects.
So, that's it. I'm home, and praying that every week is better than the one before. I'm hoping that some of my follicles begin to work again--I'm close to completely hairless now--I look like either a 12-year old boy or one of those ageless wonders of an old man that we sing Christmas carols to in nursing homes. Simply put, I'd like to look "normal" for Christmas this year. And, of course, in mid-January all the tests will be re-run to see if the transplant "took." That's the "ground zero" on this one--the dividing line between more treatment and remission. you know how to pray.
And remember those alone when you think of me.
love to you all.... Dwight
- Dwight Ozard
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