A doctor flat-out told him to stop the chemo. An infectious disease doctor, there to discuss the team's inability to 100% identify whatever mysterious infection he has this time, with a side of brutal bluntness. "You need to stop this." He's not going to stop. He refuses. A nurse told him it was time for a hospital bed in the living room. An at-home nurse, one he's known and trusted since his heart surgery, and her opinion was echoed by just about everyone at the hospital. "You cannot climb the stairs anymore." He's not getting a hospital bed in the living room. Also refuses. A transfusion brought his platelets up, a little. They are still lower than where they were after his LAST hospitalization and his LAST transfusion, and it's not like that was a good number either. They are trying to stop an ocean with a cork. He's going back for more chemo on Tuesday. I'm trying so hard to understand. It's not my body or my life or my fight. I'm trying to let go of anger at the toll this is taking on him, on my mom, on their relationship, on the entire family. Since he lost... Read more →


Miracle Man

I've been waiting all day for more updates -- something more substantial than what I have pieced together right now -- so I could post something...well, MORE. But there's no nice narrative today. The first text message I received from my mother after day two of chemo was a good one. No bad reactions. One more day of treatment and then three weeks off. He's amazing. He's a Miracle Man. I put the phone down and walked away from it. When it rang during dinner I didn't even get up to check the caller ID. Shut up, telemarketers, we're all having a nice time over here. Of course, it was my mom. The bad reaction just came later this time. Fever, shakes, a trip to the ER and another infection. Looks like pneumonia again. White blood cells and platelets have cratered. Chemo was canceled for today. Instead, a blood transfusion, perhaps. He's on a floor that's not quite the ICU and not quite the general garden-variety sick-level population. Maybe he'll go home tomorrow, or the next day. And I don't know anything more than that. I don't think this is nearly as serious of a reaction as last time, but... Read more →


My dad has decided to try the chemo "one more time." If it knocks him down again, he'll quit. But not yet. Not yet. They'll likely be removing one of the more hardcore drugs that was likely responsible for his bad reaction -- though that hardcore drug is absolutely necessary to fight a cancer as advanced as his, so at some point it has to go back into the treatment, so... *rubs temples, sighs wearily* (For the record, because it's been linked/emailed so many times, I have indeed read this article by Atul Gawande on hospice vs. aggressive treatment for terminal illness, and I forwarded it to my mom and quoted it to my dad and encourage everybody who hasn't read it to go do so right now, this second, even if you aren't currently dealing with end-of-life decisions. Which is kind of the problem. We don't want to think or talk about this stuff until we're in thick of it, when it's already past the point when we should have said "enough, stop.") (Also, when I look at that picture I wonder if my 7-year-old self inadvertently invented the Snuggie, and whether I would have a valid claim to... Read more →


Subplot

So let me tell you what else was going on last week, now that I can. Now that I'm no longer curled up in an unwashed little ball under the covers. I mean, I'm still unwashed, but it's still better because at least now I'm sitting upright, on TOP of the covers. You may remember -- or not -- that I casually mentioned awhile back that Jason was sick. A weirdly persistent sore throat turned into the most vicious acid reflux I have ever had the privilege of hearing about over and over again. Having never even HAD heartburn before, he woke me up in the middle of the night to describe his symptoms to make sure that's actually what he was experiencing. I muttered something about having it for nine straight months, grarrrrr cranky smash, and went back to sleep. Since we were at his parents' house, which hasn't contained so much as a single Tylenol caplet since the mid-1990s, he had to go out in search of a 24-hour convenience store in order to find some Tums and Zantac. They didn't help, so once we got home he went to the doctor. By this point, he was having... Read more →


Boom

I am getting REALLY sick of being so goddamned right all the time. I knew chemotherapy would be rough on my dad. I knew his doctor was pumping him full of horseshit by saying crap like, "You're gonna feel better after just one session!" My vote was hospice, not chemo, for better, more peaceful time, not more-at-any-miserable-wretched-cost time. But I also knew that someone else's cancer is not a democracy. He wanted the chemo. The more. So I just hoped it wouldn't be as bad as I feared. It was so bad they had to halt treatment just hours in because his reaction was so violent. They tinkered and restarted, but it was still so bad that by the time my mother picked him up (she couldn't handle staying there, because HER reaction to seeing other people going through it was also pretty violent, in its own way), he was running a high fever and covered in vomit. Within hours he was running a fever of over 103 and in an ambulance, headed to the ER. "Huh," his doctor said, when my mom called to find out if she should call 911. "Yeah." His platelets were down to 10. His... Read more →


My dad started chemotherapy today, the first of THREE all-day, 8-hour, super-intensive sessions he'll have THIS WEEK. Then he gets a couple weeks to kick back and relax before the next round. Maybe play some football, drink a few beers, go see a death metal concert or something. In other words: DEFLECT! IGNORE! LET'S TALK ABOUT ANYTHING ELSE IN THE WORLD. Ahem. Continuing on with some random things that are slightly more amusing: 1) Toddlers with the ability to accessorize. 2) Jason stopped at the grocery store yesterday and purchased the special nut-free store-bought birthday-snack cookies. We only needed one bag for Noah's classmates but he bought three. 3) Magnum! 4) So far, I've flushed four (4) stinkbugs down the toilet today. I know that wouldn't usually be a check in the "YAY!" column for me, but I guess it speaks volumes for just how wildly I'm grasping for purpose these days. 5) In other insect-related, the-wine-glass-half-full news, I'm actually pretty jazzed that the baby no longer looks like this: Yeah, YOU try telling people at the playground that it's a "mosquito bite on his eyebrow" and see if any of them believe YOU, either. 6) In two days, I'm... Read more →


So I have no intention of trying to fake it for you guys. I'm sad. I'm miserably, terribly, fucking-ass sad. Something inside feels like it...kind of cratered last week, so I have no defenses against even the mildest, stupidest everyday sort-of bullshit. I'm getting a zit! I can't find the nail clippers! Ezra only wants Daddy all the time and it hurts my feeeeeeelings. A kid was mean to Noah and I'm the one who burst into tears. Folding laundry dissolves into a fit about gaining weight and clothes not fitting and WHY BOTHER, MAN. WHY EVEN BOTHER. I wish they sold Xanax or something over the counter, because I can't even deal with getting my ass in to see a doctor. I had a mole removed last week and the effort nearly killed me. I'm supposed to get my hair done in a couple days and I'm all, "I don't want to goooooo, the receptionist is always so chatttttttty." I'm supposed to be planning a birthday party for the boys like, RIGHT NOW but instead I've decided to downsize the current goal to: "Get to the store and buy a package of cookies to send to school on Noah's... Read more →


So. My dad has decided to go ahead with chemotherapy after all. I don't agree with this. Nobody does, actually, except for one doctor who seems to put chemo on par with prescription-strength Tylenol. Take one! You'll feel better in no time! Giddy up, let's get this systemic invasion started! My mom called me yesterday from a pharmacy parking lot just so she could finally scream and cry out loud about it. Best case is maybe a year or two of remission before the cancer comes back. Because this kind of cancer always comes back. The more likely case is that the chemo will kill him, or make him so desperately sick that the extra time will be the opposite of good time. But he's changed his mind and. He. Wants. That. Time. Which means it's probably time for me to stop talking about it for a little bit, because even though my opinion on the matter is probably something like this... ...I shall instead post the other photos of the mini-pre-birthday party we threw for the boys last weekend like this: There were cakes! To tenderly caress! Festive paper fire hazards! The realization that omg, our shirts like, totally... Read more →


Three to Six to Who the Hell Knows

We left later on Friday than we'd planned, as always, heading up to Pennsylvania in the thick of DC rush hour, hitting additional rush hours in Baltimore and Delaware and Philly all the way up, to a degree where the math of "rush HOUR" starts bending the space-time continuum and we basically sat in traffic for five solid hours, until 11 o'clock at night. We arrived at Jason's parents far too late to get over to visit mine, and I admit I was grateful for one last chance to steel my nerves before having to walk in and see my dad, now that we Knew, here in the After, the Suck. The first thing he said was that he'd read my posts. I'd emailed my mom and all but ordered her not to read them -- I didn't want to make her cry, but I needed to write what I needed to write, and I knew I'd end up with something different if I imagined them in the audience. She completely ignored me, of course, and then promptly told my dad to read them. He loved them. He stood there, looking so thin and pale and bruised like a peach,... Read more →


Thank you. I...don't really know what to write next, but a formal Internet-wide thank-you note seems appropriate, for all of your lovely and kind comments, emails and tweets. Reading them felt like...well, like an actual physical hug and actual physical arms propping me up. Thanking each and every one of you personally would probably be the best thing to do, and a much better use of my time than what I've actually been doing. Which is...not much. A lot of staring into space. Watching cooking shows. Swiffering up our yearly mid-September ant infestation in the foyer because the wipe-out-the-colony-in-a-blaze-of-Jonestown-glory traps aren't working nearly fast enough for my liking. I've made significant progress through the box of Godiva chocolates Jason ran out to fetch me almost immediately after I got the news, but that's only because it fits so well into my established plan of sitting on the couch and staring into space. The one thing I haven't been able to do yet is cry. Which is a weird feeling for me, because I cry over everything. TV shows, movies, commercials, any YouTube video involving a dog, news stories about the triumph of the human (and/or dog) spirit. But for the... Read more →