September 30, 2010
September 29, 2010
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 hemoglobin was at 7. He was bleeding internally. He was given a private nurse IN THE ER, and it sure as hell wasn't because they were lacking patients elsewhere.
Tranfusions. CAT scan. Up to ICU. Chemo session #2 was canceled, though he continued to insist that he wanted to keep going, because he continued to amaze everyone around him by not being at all as sickly as someone as sick as he is should be. "Okay, we'll call it postponed, then."
Then, after all the little firecrackers that startled and alarmed, the bomb dropped: His spleen is enlarged, which means the cancer is officially Stage 4.
It was Stage 3 last week. LAST WEEK.
That was the week I talked a good game about better time, instead of more.
Cancer is calling my bluff.
September 28, 2010
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.
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 going to be in possession of a five-year-old child.
7) And that five-year-old child will be in the obnoxious possession of a Leapster 2, aka One Of Those Things I Used To Sniff Dismissively At Because That Is Just A Handheld Video Game & Preschoolers Should Not Own Handheld Video Games, "Electronic Educational Learning System," My Ass.
8) Now I Am All, "Here, Have A Handheld Video Game, Whatever, I'm Tired."
9) Don't tell him though. IT'S A SURPRISE.
11) I didn't have a full 10 things, as usual.
12) But I hate ending lists at four or nine.
13) Or fourteen.
September 27, 2010
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 birthday."
His birthday is on Thursday. I have like, two-and-a-half more days to make the cookies happen. I CAN DO IT. I BELIEVE IN MYSELF! AND IN MY ABILITY TO OUTSOURCE THINGS TO MY HUSBAND.
But I know nobody wants to hear about how sad I am. (SPOILER ALERT: Pretty sad!) Sad is boring! Sad is such a bummer! Sad is just begging for someone to come around and whack me with a dose of I-HAVE-IT-WAY-WORSE-THAN-YOU style perspective, like a sock full of pennies. Plus I sense that this whole "grief process" thing has yet another violent mood swing in store for me ANY MINUTE NOW.
So instead, I'm just going to try to post about the little things that manage to cut through the sad and make me rethink that life plan of going back to bed with a bottle of Syrah and a bendy straw.
Today's thing: Glow-in-the-dark skeleton jammies.
September 24, 2010
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 match!
Poses to throw!
Skepticism over zucchini-bread-presented-as-birthday-cake to overcome!
(Not pictured: an entire jar of Bourbon peaches.)
As in: PRESENTSSSSSSS!!!!!!!!!11!!!!ELEVENTY!
Toddlers to baffle!
And finally, a Poppy-approved costume change.
September 22, 2010
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, praising my writing to the skies -- vocabulary! prose! flow! everything he spent 30 years trying to coax out of his high school students! At any other time in my life, I would have burst into hot ugly tears because that's all I've ever wanted to do since I was a tiny thing with my crayons: To be a writer and make my dad proud.
On this day, though, I scrunched and contorted my face and felt some warmth juuuust behind my eyeballs, but I still could not cry.
Later that day, I watched my mom cry. A lot. I hugged her and patted her back and stared up at random points on the ceiling. I watched my sister cry as she talked about a dream -- a ridiculous, meaningless dream -- where our dad expressed his completely fictional disappointment with her. I watched my mom cry again as my sister and I tried to convince her to hold off on putting the house on the market, as she heard me say the most awful thing out loud, because someone had to.
"Three to six months, Mom," I said as gently as I could. "Three to six MONTHS."
I didn't much like the idea of those three to six months being spent with a sign on the front yard, with strangers marching through the house and eyeballing medical equipment and oxygen tubing and perhaps even him, in bed, because how the hell can he get up and out every time a realtor wanted to stop by? I didn't like the idea of three to six months' worth of stress over low-ball offers and contingencies and inspections and contracts falling through, and then, even if everything works out...a move? To where? To what? How? Look at him. Look at how fast it's already happening.
I felt mean and cold and hard. When it became clear that they were going to ignore our pleading and put the house on the market anyway, I got vaguely irritated and stomped off. But I still did not cry.
Even later that same day, Jason and I volunteered to go get some carry-out for everybody. We drove to a restaurant and sat at the bar while we waited for the food and I rehashed everything over and over again. We drove back to my parents' house and I talked and talked and talked, arguing with no one in particular, because Jason had already agreed with me from the beginning but was just allowing me to ramble.
We pulled up to the house and I said it out loud for probably the 12th or 17th or 32nd time: "Three to six MONTHS."
But this time I only made it to the word "six" before I was wailing. I put my head down in my lap and cried and cried and cried.
Jason got sick the next day, with some kind of vicious acid reflux episode that wouldn't let him eat or sleep for rest of our visit. He still had a work-related obligation on Monday night involving a cocktail party and a baseball game at the Phillies' stadium. We went even though we both felt miserable, trying our best to put on a happy face. My mom had asked me to get my dad a blue Phillies shirt while we were there -- which required a Lord-of-the-Rings style quest to find, despite the fact that every other fan in the stadium seemed to be wearing one.
Once we found the elusive blue shirt, I bought myself a Phillies hat to replace the one I lost when we moved.
Yesterday -- the day we were planning to leave -- my dad had a doctor's appointment. The magical call from the lab never happened on Friday -- it turned out that in my parents' shock they had completely misheard the doctor and the full pathology results would take several days longer than that.
My mom called me from the office parking lot, shrieking at the top of her lungs.
"IT'S GOOD NEWS IT'S GOOD NEWS IT'S GOOD NEWS!"
She was beyond hysterical and I started shouting over her, begging her to get on with it and tell me. I felt my feet going numb. What good news could there possibly be? Was the doctor completely wrong? How could he be wrong? And if so, then what the hell is wrong with my dad?
My mom finally calmed down enough to say that the leukemia was not acute, it was chronic, and started rushing to assure me that this made "all the difference in the world" and it "wasn't a death sentence" and the doctor was telling them about how TONS of patients go on to live YEARS with this diagnosis. YEARS. Now, this was just their regular family doctor and they'd need to talk to the hematologist but still, Amy, STILL! Everything is going to be okay! This changed everything! EVERYTHING!
I sensed my mom was waiting for me to scream, to laugh, to give a triumphant whoop. Instead I went weirdly quiet and stared at the ceiling. I told her we'd be over once they got back from the doctor.
Jason started questioning me: How can this be that different? He still can't do chemo. He still can't do a bone marrow transplant. What treatment is there? Did they catch it earlier than they thought? It's still obviously coming on fast, and making him sicker, so...?
I shushed him and sat there for a minute trying to process everything. I felt like I'd been knocked off my axis, like it was Wednesday night all over again, only...worse? I felt...angry?
"What the fuck is wrong with me?" I asked out loud.
How many times did we have to go through this? How many phone calls and car trips and well, THIS? How many times did I have to lose him, to grieve over him? To worry endlessly that The End would not be peaceful and quick, but painful and long? At what point is "more time" not actually better? When was this really and truly going to be over?
"What the FUCK is wrong with me?" I asked again, to no one in particular.
Part of what was wrong, thinking back, was that my brain was starting to already remember random Google nuggets I'd read about the chronic diagnosis. It would be one thing if they caught it early, or if he was younger, or if he was otherwise in better shape, health-wise. There would be some additional treatment options, some chance at the disease staying in a holding pattern for a decent length of time, of him BEING one of those "TONS" of patients who live for years.
The doctor had still not told my parents what stage the cancer was actually at. On the way to their house I pulled up a few websites on my phone and quickly cursed my creepy photographic memory. At Stage III or IV, after anemia develops and other internal organs get involved, intensive chemotherapy or a bone marrow transplant are pretty much your only options. My father has been anemic for a few months already. He had to be at least at Stage III.
The doctor told my parents something about getting his platelets and anemia back in check, making it sound -- at least to them, in their amped-up joy -- like fighting advancing leukemia required little more than an iron supplement, tra la la la laaaaa.
The only difference I could really deduce between a chronic and acute diagnosis in my father's particular case was that while it would very likely kill him, it would just take a bit longer to do it. Or maybe it would let the chemo do it instead.
Jason had suggested outside that I try my best to keep my mouth shut and let the doctors talk with them, to let them enjoy this reprieve, and to pretend like I didn't know any better and was just as happy as they were. I promised to try.
When we arrived at my parents house I felt downright sick with knowledge. My mom came to the door with a huge smile on her face and her arms in the air, repeating her refrain about the GOOD NEWS! GOOD NEWS!
I could see my dad standing in the hallway behind her, clapping his hands.
I am a terrible liar.
Noah amused himself with my phone during the trip home, completely draining the battery. So I didn't see my mom's text message until a few hours after she sent it.
u were right
I am exhausted. I am angry. I need something to hit. Something to throw. Even though I never really believed that the switch in diagnosis meant anything...maybe I did. I know my parents did, which makes the whole farce seem so extra cruel and unfair.
Their house is on the market. After being at peace with the no-chemo route on Monday, he seems to be changing his mind, despite the high risks, in a desperate bid for more time. My mom is terrified of chemo, terrified of no chemo. I would now give anything just to have been wrong about the whole thing.
Because now I can't stop crying.
September 17, 2010
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 past 48 hours or so, I've been a STONE. I doubt evenSteel Magnolias (BUT MAH DAUGHTER CAAAAAN'T) or A Little Princess (PAPA! PAPAAAAA!) would trigger anything more than a snort of derision and a crack about the visible teeth marks all over the scenery.
A friend of mine called yesterday after reading my post and she immediately burst into the tears that I was unable to shed, but oh, I was so grateful for her call and the sound of her voice. She let me ramble on and on for as long as I needed, though I realized I sounded oddly military in my list of Things That Of Concern: having to explain things to Noah, for one. Ezra's young age and lack of memories. Their house, my mother, hospice care -- all of which I rattled off like logistics from a a spreadsheet before brightly mentioning that Hey! I'm getting ahead of myself. Still need to wait and see what the lab results tell us, right?
She paused, awkwardly, knowingly, and I suddenly realized what I was saying. Oh. Denial. That.
But it's true. I managed to write that entire post yesterday without really actually letting the news sink in. Like I would jinx something by talking about the obvious likely outcome. Like tomorrow's call from the lab could still magically make it all go away. Like the next time I Google acute leukemia I'm going to get a completely different set of results, so instead of a prognosis that took his age and health and medical history into account, would look at the comment numbers and Twitter outpouring and be all, "OOPS! NEVER MIND, YOU'RE SPECIAL! YOUR PROGNOSIS IS OVER HERE, BEHIND THE FREE UNICORN."
This probably would have been a good opening for that cry, but instead I just went back to work for awhile before spraying the ants with the can of super-toxic Raid that Jason doesn't know I use when he's not around because I don't think the environmentally-friendly stuff he buys does anything and I FUCKING HATE ANTS SO MUCH.
So then I decided to scan more of the old photos my mom sent me a few weeks ago. In preparation for the Move That Was Supposed To Solve Everything, she's probably spent a hundred hours over the last few months meticulously sorting through hundreds of photos, so all seven of us could receive gallon-sized Ziploc bags' worth of orange-y memories. Scanning them seemed like a nice mindless activity. Load photo. Hit button. Stare blankly at wall. Occasionally push tongue back into slack-jawed mouth. Repeat.
The latest batch are particularly hilarious -- ripe for cautionary photo essays about Jams shorts and tube socks and decade-long awkward phases -- but of course I had to start with the photos of my dad. Most of which were taken with the exotic touristy background locale in mind, so he and I are blurry squinty-eyed figures standing way too far away from the camera.
I plucked out a few that seemed to reflect my mind's memory of him -- sunglasses and a baseball cap when I was really little, then years and years of various plaid ivy caps, coats with patches on the elbows like every good high school English teacher, church clothes every Sunday. Sitting in his chair, or posing at Easter in front of the forsythias he planted so my mother wouldn't have to look at our neighbors giant RV from her beloved screened-in porch out back.
I have better photos of him, of course. Gorgeous ones from my wedding day, as I pin his corsage on in my parents' downsized townhouse living room and he escorts me down the aisle at a church they attended by I did not, anymore, at that time. And more recent ones with our digital cameras that include him and the boys, photos I could immediately check for closed eyes and bad lighting. I have photos from hospital rooms where we still made jokes and treated it like no big thing, here, hold Ezra and make a funny face for the camera. Photos of him at home, with his oxygen, lying down but smiling anyway.
I'm glad to have those photos, particularly for Noah and Ezra's sake. Ever since they were born, I've been particularly careful to take photos of them with their grandfather, because I knew. I have been walking this path of a kind of...knowing denial for years now. It's coming. Don't panic, but carry a towel. Just in case.
Right now, though, I admit I prefer the old pictures, from before I knew.
I never want to forget the before.
September 15, 2010
I finally gave up and decided that we both probably needed to go play outside for awhile.
Three months ago, my mom mentioned my dad's platelet count. Among probably a good five or six other things that were of concern. Ever since the roller-coaster ride of his heart surgery and multiple bouts of pneumonia, I haven't written much about my dad, I know. There was almost too much to say, what with the continued irregular heartbeat episodes, his permanently damaged lungs keeping him tethered to an oxygen machine 24/7, his diabetes, his hearing loss, the falls, macular degeneration, mysterious bruising, overwhelming fatigue, and the depression that inevitably comes when your age and body and health turn on you so dramatically, when the few simple pleasures you have left -- reading and watching baseball on TV -- are slowly slipping away behind increasingly cloudy vision.
He only leaves the house for doctor's visits, and there are so many, and there never seems to be good news or an all-clear from any of them anymore. Something else to watch and monitor. Suspicious growths that need to be removed, minor surgery to be performed, something new to be followed up on in three months, give or take the specialist's vacation schedule.
So I didn't really think much of the platelet count thing at all.
Instead, we all threw our energy into figuring out the house situation -- to get them into a smaller, single-level place, preferably one for seniors that would allow my mother some freedom for the first time in years, where she could feel safe leaving him for longer than it takes to make a furtive trip to Target Pharmacy for prescription refills. So the need for her own visit to her own doctor wouldn't lead to a tearful, panicked phone call because there's no one to watch your dad that day.
This lead to cleaning and purging and sorting and donating. Then came the discovery of expensive house repairs, at just how overwhelmed they've been in their small townhouse for all this time. Then we found out about a home equity line of credit and more debt than we were expecting. They'll only get how much for the house? The top-choice communities want how much upfront?
The next-door neighbor had a psychotic break and did WHAT out in her front yard? OMG, that would almost be funny if the whole situation weren't so terribly, horribly sad.
The house is going on the market on Monday. The follow-up visit for the platelet count issue was yesterday.
The doctor took one look at the bloodwork and ordered a biopsy performed on the spot. The results were definitive. It's leukemia.
The lab is now looking at the biopsy and we'll know the extent of the cancer by the end of the week, but his doctor was kind yet blunt: We are probably looking at something acute. The diagnosis alone means he is already officially too sick for the senior community they planned to move to. He is already saying he does not want to go through chemotherapy.
My mom related the information over the phone last night and I sat down on the floor. I felt like I was floating. I couldn't really cry. I remembered the time she told me about his throat cancer in a Taco Bell parking lot. The time I sat on the floor in my dorm hallway five years later and she told me it had come back. The time my brother-in-law called in the middle of the night to tell me about the aneurysm.
At some point, the calls drift together and aren't quite as distinct, even though they kept coming. A mysterious fall. A heart problem. We're at the hospital. At the ER. Headed to the doctor now. Diabetes. Skin cancer. Heart surgery. Pneumonia. Collapsed lungs and more pneumonia. Congestive heart failure. His eyes, his ears, his lungs, his heart, again. It was always something, he was always aging, always sick. Perhaps I'd started to just expect it, and the phone calls.
But I wasn't expecting this one. I just wasn't expecting it to be this.
September 14, 2010
Yo. Homes! What up. And stuff. I hope to publish something real ("real" being completely subjective because you know everything I post is complete and utter indulgent nonsense) later today, but Noah's off from school thanks to VOTING and DEMOCRACY, so it's kind of crazy.
But I realized there's some housekeeping type stuff I should tell you about. So yes! I have lured you and your RSS readers here on false pretenses! You expect to be entertained and instead find yourself informed! I am evil, and should be destroyed.
1) As some of you may have noticed, the Bounce Back column at AlphaMom has been MIA the past couple weeks. The truth is, I was fired after failing a random drug test. Okay, not really. Mostly, I felt like it was getting silly for me to be writing a column about postpartum issues almost TWO YEARS after having a baby, so Isabel and I agreed it had more than run its course.
2) Of course, you are still more than welcome to ask questions about crazy postpartum craziness at the Advice Smackdown, that old beloved workhorse that's still going as strong as ever. Mondays, Wednesdays and Fridays. It definitely has evolved more into a parenting-type advice column than the hair-and-skin-care questions of Olden Tymes, but I'm still happy to answer pretty much anything you throw at me, be it pregnancy or baby food or sticky social etiquette or ideas for how to get your hair to stop doing that thing. Or substitute "hair" for "enraging tantrumming toddler." I am also glad to play impartial referee for "who's right and who's an asshole" type of situations. I love those. Anyway, the email for that column is still amyadvice[at]gmail.com. Hit me, dawg.
3) And! And then! I will also be doing a couple expanded super-sized Advice Smackdowns a month. They won't be tied to the Q&A format but will be more like "topical think pieces," which is how Isabel describes them, because that sounds better than "Amy rambling for awhile about stuff." The first one of those will go up later today.
4) Hey! Remember that time I mentioned lip-syncing to Miley Cyrus in my backyard during a Labor Day party? The video evidence is now online. My performance is really... embarrassingly enthusiastic, I have to say.
5) I don't actually have a fifth thing. It just feels wrong not to have one.