I’m just wrecked today. I slept well last night but I have truly misspent the afternoon – no nap, and not even anything to eat since about 9:30.
But I do have this to show for it: https://twitter.com/IllLiveBlog Please follow me there. I’ll endeavor to entertain you. I’ve been avoiding that place for ages in the fear it might swallow me whole. I won’t let it.
I’m heading into the mood swinginess of tapering off steroids. If I bother to look back to last fall I’ll probably find the entire process chronicled there in words. I’m feeling a little overwhelmed by the volume of writing here, lately. I’ve fallen down on the job as an organizer of information. But when the information is the stuff of your life, it’s harder to sit dispassionately applying tags. I’ve got some ideas, schema, and most importantly, friends who went to library school more recently than 20 years ago, so I’ll come up with something before we all drown. Promise.
I had the best day. I’d say my conversations with my dear R, N, and W were the best – and you guys really are and I loved seeing you all! – but maybe the thing I was proudest of was dealing with a broken fridge. And not falling apart because of it. And now the fridge works again (the guys said it would work “forever” and I’m not sure what that means for fridges back in Russia where they’re from, but I hope they’re right). No, maybe I’m proudest of stopping at the wine store on the way back from the park and getting some cheap chilled sauvignon blanc to sip in bed and ponder taking an actual afternoon nap. I did not, of course, nap. I was too excited about the setup.
I am having total recall these days about things from twenty and more years ago. It’s either the wonder brain drug, or just a hell of a lot of free time. I reached out to a beloved poetry teacher from college, to see if he could help me remember a poet I heard read in what must have been 1990. By the time I got his reply, I’d found it! The poem! The poet! And then got the most wonderful reply from my teacher. I am holding my teachers especially close these days. The good ones. And I was so lucky to have so many good ones.
This is the poem, if you’d like to read it. I tried, but failed, to find audio of CD Wright herself reading it, but she has a very gentle accent from Arkansas, and the last two lines you need to read in the style that people do these days, emphasizing every word with a period in between. Actually, I want you to go off and read this poem to yourself out loud. Now I’m giving you an assignment.
I let J out to play basketball tonight. Thanks to R sending us Indian food for dinner there was not the usual anxiety about cleanup. I had Young J plow through his homework and then let them have after-dinner TV (which is kind of unheard of around here). Then with ten minutes to spare before pajamas, I pulled up recordings of J’s songs and played them for the kids. They’d heard them before but I think Young A was less familiar. He was rocking OUT. They both were. I missed J, but I felt good and sneaky, creating these little fans for him here. Then Young A and I played a throw/catch rhythm game on the drums. It’s been a while. Cancer has suddenly made me a much better mom. At least I hope so.
While we listened to the music and they stroked my arms I was suddenly confronted by their ragged, filthy fingernails. I am the primary fingernail caretaker around here. It was always thus. So after they were pajama-ed, I brought out this Hello Kitty set I was given for my seventh birthday, never used and somehow never gotten rid of, and decided to teach these boys what a fingernail brush is for. They loved it.
I’ve been thinking a lot about Frank O’Hara’s poem, “The Day Lady Died,” in which the technique of skirting the issue, forestalling, not telling until almost the end what has happened, evokes the day of the death of Billie Holiday. The other poem he reads above, “Song,” is different but offers that same kind of flat delivery. Something happens and another thing happens and a sequence is presented. And we’ll make sense of it all later, over a drink. Note to self: Have that drink tonight. The Benadryl-narcotic-melatonin triumvirate last night asked after its fermented friend.
I’ve been talking a lot today – to my good old friend N (we met in a poetry workshop years ago) and my friend R who I met in the cafe, and also to the two burly but sensitive Russian men, absolute angels, who swooped in and fixed our suddenly broken fridge today. I keep experimenting with the telling of my story. Yes, the steroids are releasing their grip, but I still told the repair guys I have cancer. And they took as good care of me as my own husband or a doctor would have, they told me everything would be fine. (And if I wrote a check to Cash, no tax.)
I’m feeling lighter than I have in weeks. The burrito I’m pondering having for lunch may temporarily remove this feeling. But then! I’m meeting W in the park for a walk with my brimmiest hat. It’s a perfect spring day. I feel all right.
As I’ve mentioned here before, I don’t have a lot of experience with cancer. I am the first one in my immediate family to get it. We have known people with cancer, but my experience with it was not at the closest range. We experienced grief from losing loved friends – including one of my dad’s oldest friends, to one of the most evil of them all, pancreatic cancer. We have mourned cancer losses.
More recently, I have happily celebrated cancer successes. I have friends who have survived! But I wasn’t with them at their bedsides as they struggled. We weren’t that close. They didn’t live nearby. I was a donation friend, a supportive comments on Facebook friend, a make a mix of good tunes for the hospital friend. That’s about all I did.
The most extensive time I ever spent engaged at all with the concept of cancer in any way was when I had a job, over the course of several summers and holiday breaks, at the National Cancer Institute, in Bethesda, MD, in the early 1990s. It started as a temp job. A clerk-typist job (later relabeled “office automation” to sound more up-to-date). As I approached college graduation, they got the wrong idea and started talking about sending me to medical terminology courses.
I was not working in a lab. I was on an administrative floor, just down the hall from the Director. My boss, Dr. S., was a Deputy Director. She was very nice (and she, too, now, is gone, from cancer). She was classy and mysterious and I learned she had lost her husband in a sudden and wrenching way while they’d been on vacation somewhere nice. She had a weekly hair appointment. She was a scientist Katherine Hepburn. I barely had any work to do for her. I think she kept her own calendar. And how could she depend on me, really, if I only showed up in the summers and around Christmas? I answered phones, and probably typed stuff (I typed really fast). But my main job was to get up from my desk and walk over to the computer table and log in and out of a tracking system scientific papers written by scientists in the labs, which Dr. S. needed to approve before they were submitted for publication.
In order to log these in, I had to read the titles. And some of the titles scared the shit out of me, at first. Incidence of cancer among broccoli eaters in Japan, was one common theme. A lot of these papers were out of epidemiology, and if you’d bother to skip ahead to the end, you’d see the good news: There was none! Still, there were enough scary-sounding studies to bring this song constantly to mind. I did learn good lessons, though, on reading scientific papers intelligently. Many media outlets today still have not learned these lessons. So for that alone I was grateful for the drudgery. I learned how not to let science scare the shit out of you for no reason, especially if you weren’t actually going to be doing any science yourself. For about five minutes, I got excited about epidemiology, because I saw the CV of one of the epidemiologists and saw she had done undergrad in Art History. I wasn’t going to ever be good at the math, though…
Boy, it sure sounds like a sleepy office. Let me introduce you to my office mates. There were two other secretaries, so our desks were arranged in a C shape. One, B, was more pleasant to talk to, although she did like to talk too much. I will never forget her malapropism when discussing her proclivity for watching Tarzan movies in bed on weekend mornings. She said it was one of her “childless wimps.” She was the secretary for the bon vivant Dr H down the hall, whose job I think was to organize an annual conference. They knew how to work not too hard.
The “power” secretary in the office was P. She was petite and buttoned-up and I couldn’t stand her. Her boss was the imposing Dr A. I didn’t like him much. And there was a lot of intrigue going on in the Division while I was there. A Chicago Tribune reporter calling and harassing on the regular, eventually publishing this about it all. Which meant, yes, this guy reported to the big boss. Once, he came in for a meeting while I was at lunch, and when I got back, he was sitting at my desk. I stood there, arms folded. Finally, he looked up. “Oh, is this your desk?” he asked. “Yes,” I replied. I was also there the day his deputy lab chief got sacked for taking kickbacks from big pharma. Kind of exciting and weird. Lots of phone calls, non-stop. P took them all.
My favorite day was the one that P was out sick. They had to send a senior secretary from another location to replace her because I was clearly not up to snuff. C, the replacement, was a lovely woman. I enjoyed talking with her. She was also a Jehovah’s Witness. Dr A blundered in from lunch and on his way into the office, turned to C and said, “If anyone calls, I’m not in.” C drew up to her full height and said to him, “Dr A, I am a Jehovah’s Witness, and I am forbidden to lie.” Missing zero beats, Dr A turned to me and said, “Take the phones, will you?” (Obviously, it is OK for Jews to lie.)
Where was the cancer in all this? I mean, it was the whole reason for the place. Across the street was the clinical center. I had to go over there once on an errand. On the way down in the elevator, a patient in a gown brushed against me. I came back to the office and noticed some dry blood on my arm. That was the closest I got to anything. I didn’t have any broken skin on my own arm, so no major risk. I scrubbed down and vowed I’d never get sent over there again.
It was a summer job. It earned me money for CDs and books and my semester in Italy. Now, at a remove of 20+ years, do I stop and think, THAT’S WHY YOU GOT CANCER! No. That’s preposterous. This disease is wicked random. My number came up.
Post script: I was there to attend the gala farewell luncheon when Dr A retired. Those guys don’t stay retired for long. He is, as far as the last time I checked, the medical director of a trade association representing an industry that promotes a product you could scarcely imagine a former director of a federal cancer research program stooping to do.
Wacky Wednesday, by Dr. Seuss, is a favorite book of Young A’s. At least it was a few months ago, when he was a more emergent reader. Now he is shunning “easy” books and making conversational shifts with phrases like, “Speaking of which…” (We’re dumbfounded, but pleased.)
His favorite page in Wacky Wednesday contains the charmingly old-fashioned interjection, “By cracky!” I think that one is due for a comeback, don’t you?
The youngs went for a sleepover at J’s parents so despite my misstep last night (thinking sleep could happen with a narcotic missing from the mix), I actually got to catch up a bit once I corrected my error.
We didn’t have big plans for the morning. J reliably found the perfect place for us to have brunch and we got there before there was a wait. I was feeling calmish, even. Today is my first day of tapering down to two doses of steroid (from the all-time high of four). I’ll be at this level for a few days. I can already feel myself uncoiling a little, although my military precision in giving orders for this afternoon is very much in evidence. Efficiency above all! This has never, ever, been my motto. It is now, at least until the steroids run out. I knew exactly which birthday presents were required, which bookstore we’d buy them at so I’d earn my coupon (bingo! $10 off next time!), then we’d need to pick up some groceries for the week.
Grocery shopping without a list is usually not recommended, but when go with your wife and she is on steroids, it’s great! She runs through the meal plan for the week and asks all the right questions, maybe repeating them three or four times! For the record, we arrived home with what we needed, save the fruit leathers, which I saw we most definitely did NOT need. (Now we’re stocked up til the end of the school year.)
Yesterday I appealed to the universe for an end to the weird coincidences that keep assembling around me. This morning alone, there were two major ones. One involved an email I sent this morning to someone from the very distant past, and then the person checking out our items at the coop being connected to that as well, someone I met in 2003. Also, while on line waiting to pay for our food, I read and teared up from an email from a colleague who’d just heard my news. Minutes later, we pass her on 7th Avenue. She does not live in Park Slope, so the chance of this run-in was kind of small. This is the sort of thing that’s happening every day. Makes it even harder to sleep.
Tonight I have my work from home job from 5-9, and I’m hoping for much less wacky. By cracky.
The days I’ve been having – they’re just not normal days. It was good to have Mom here accompanying me through them, so that she could see objectively that things are cuckoo. I feel that the universe sent me one very bad thing and ever since has been flinging at me, very much at random and with great frequency, particles of good, particles of great, and particles of WTF awesome. The order of these miracles are not just nice things being done for me – and there are legions of those – but also some very simple space/time continuum coincidences that are becoming harder and harder to imagine are totally at random.
Even under normal circumstances, this constant barrage of good might strain credulity; under extreme sleep deprivation conditions, you do tend to believe a grip on reality could start to turn tenuous. It’s very, very nice to have 10,000 unbelievably great things happen between breakfast and dinner, but what happens when they start to happen daily?
My night of sleep was magical. Then we went to brunch with Mom, I made a more sensible choice than the outrageous whipped cream/chocolate/nutella pancakes that were calling my name, and the sun was shining. Today was my first day out as GIANT HAT LADY. Dabrafenib makes your skin much more susceptible to the sun. And if you hadn’t noticed, the sun is how I got here in the first place. (The 1970s sun, but still.) So I hit up Marshall’s yesterday, and found an unusually good selection of hats. I’m glad I’m wearing my hair short these days. I’ve got one enormous blue one with a brim that extends past the Cape of Good Hope, a more casual straw cowboy hat for outdoor happy hour (accepting invites), and a huge black Betsey Johnson one for fancy. J called it my Easter hat. Yikes.
After brunch, the kids went to the next block over with their bikes. Street fair day, and a whole block with no cars. I didn’t join them, but coming home and lying down and just thinking of them zooming around carefree lifted me up.
The kids went out to a sleepover at J’s parents, and I accompanied Mom to her bus. I usually drive her. I don’t drive often in the city and when I have the opportunity to go to midtown via the West Side Highway, I always love it. Perversely. Despite all the traffic. It induces brief fantasies of cab driving as profession. And on the way back home I blast music like a 17-year-old.
Turns out I’m not going to be driving for a bit. Something to do with my brain not being all right in the head. I was a little surprised to hear months as the length of the restriction Nurse Practitioner K gave me, but luckily, we live in a city, our car is a luxury for out of town trips, and J can move it for street cleaning.
I consulted the subway website to inform myself well ahead of time. New readers – who, by the way, are WELCOME – may wish to familiarize themselves with the last time I accompanied Mom to her bus while on cancer. (Mom, let me explicitly warn you that since you lived this experience with me, you are not obligated to read that post ever again.)
Today went better. Much, much better. But there were still a few of those weird little moments, like Mom not telling me until we were walking directly in front of the Garden that my brother G and his family were back home hosting a party to watch the Rangers-Capitals game that was on the Jumbotron right across the street. I texted G a photo of the Jumbotron. I think the score was 0-2 at that point. I hope it got better for your Caps…
After leaving Mom, and under the influence of lunchtime steroid, I did some pretty dedicated clothes shopping on 34th St. 60% of my haul for the boys, of course. Only the best t-shirts in the world will make things right. Came home, found my completed coffee punch card and cashed in for an iced decaf to carry over to the street fair. Bought the only plants my dark balcony will accommodate, coleus and impatiens, and carried them home.
It was dark and quiet at home, and I found some friends sent me lovely hemp lotion and mint lip balm all the way from Whidbey Island, WA.One of my main goals this week had been to moisturize, actually. And I was so relaxed, I didn’t even mind being confronted with the kitchen table piled with Lego. Young A is hard at work on his first big build, and it can stay til tomorrow.
To all the assembled saints of the Melanoma Program, and perhaps even to G-d genderself, ALL PRAISES.
Dinner was great last night – especially when at a certain point I finally stopped talking. The kids all got along (well, Young J was reading) and it was grand. The kids did take forever to get to bed, but that was my fault, for showing them the new clothes I’d bought them. Young J smiled at his new shirt in the mirror and said, “I’m gonna look good for picture day.” (Oh my sweetest love, a tween in the making!)
An email comes in from the counselor at school who works with my kids (for non-cancer reasons but boy, are we grateful for her a thousand fold now). She knows I like to hear what Young A is telling her about me. This time, it was: “much better since taking steroid medicine and Benadryl although it makes mom so sleepy.”
Last night before going to bed Young A came to my nightstand, which has become The Garden of Pills. He asked me to read him the names of each of my medicines. I think he wanted especially to know which one was the steroid, since it has been the source of my exhaustion. DEXAMETHASONE, YOUNG A IS COMING FOR YOU. I almost cried – his gesture was so sweet and caring. Learning to pronounce the names of my cures is important. Perhaps the thought is if he practices the names enough, he will cure me. But they are, too, funny words to say. Levatirecetam. Dabrafenib. Lorazepam. Pantoprazole. (That reminds me, I owe K some rap lyrics. This weekend I’ll write them, after lunch steroid when I am at my most “brilliant.”)
When I typed out the order of sleep maneuvers last night, I assumed those left awake in my household at the appointed hours would be rallying, making sure I was hitting my marks.
But, hello? Mom worked hard for hours to make a delicious dinner and she was out cold on the couch. J was watching baseball. I was jittery. I took the dabrafenib. Have gotten good at all three down the hatch in a gulp.
I had a good text chat with a college friend (hey B) and my steroid mania seemed to not be abating.
I laid out my cures on the bed. I decided to start with the melatonin, which was timed release and ohhh, I wanted to let it have time. Then the Benadryl of impossible packaging. Then the Lorazepam, which I gave the side eye for having failed me before. These drugs would work together, or they’d make me fall apart from another bad night. The only option was success.
I still hadn’t powered down my phone. I had to type just one more funny thing. As my head inclined slightly over the screen it VERY SUDDENLY WEIGHED 100 LBS. I realized I needed to finish up getting ready for bed before the truck hit.
I brushed teeth, said goodnight, climbed in bed. Lights out. I was giddy and alone, no J to gabble on steroidically to.
I started laughing. I had fits of laughter. Oh no, I said to my brain. Come on. I remembered my college roommate V and how she’d laugh in her sleep, which was cute/creepy.
And then I stopped remembering anything. At all. Curtains came down right on top of me.
At 5 I had to pee. And my canary, Young A, also did. My eyes and nose and everything were so dry and squinty. I just wanted to get back to bed.
And then I did. And slept another hour.
The title from Henri Michaux’s poem, “I am writing to you from a far off country” was in fact the very first coherent thought I had today. But I didn’t realize that it starts like this:
We have here, she said, only one sun in the month, and only for a little while. We rub our eyes days ahead, but to no purpose. Inexorable weather. The sun arrives only at its proper hour.
(Richard Ellman, trans)
Another gift from my brain to me, in recognition of finally finding the magic combination. Thanks for keeping it together up there for me, ol’ brain. We’ll get through this.
Tonight: The operational portion of Operation Sleep All Night begins. (This is a very different sort of thing than Operation Sleep Damnit! I & II which were launched when the kids were babies.)
1700 hours: Eat an orange and a cookie and take third and final dose of steroid for the day. Resume maniacal blogging.
1800 hours: Shabbat dinner. A good, heavy one prepared by Mom this week. Meatballs and pasta. I’ll have a small tumbler of red wine. There is pie too. I’ll practically be in food coma before the meds even kick in.
1900-2000 hours: Children react to pie, shun bed.
2030 hours: Lights out. I will lie in bed anxious with anticipation. And unable to eat more pie, due to two hour eating moratorium before the most venerable and important drug, dabrafenib.
I just popped a Benadryl gel cap and am going off to nap for hours thinking about the fun hats I just bought. I’m going to be a committed hat wearer this spring, due to my medication making me extra sun-sensitive. (And of course due to the whole reason I got here in the first place.)
Being sick in the spring definitely has its compensation.