Greetings to those who’ve arrived here from my patient profile on The Answer to Cancer!
I’ve been writing this blog with a known audience in mind until now. But once the posts reached a critical mass, I decided I wanted to try to boost this blog’s readership, specifically to include people who, like you or your loved one, may be looking for something beyond clinical information about immunotherapy. Something a little closer to actual, lived experience.
I haven’t been great about tagging the posts by subject (I started to, but my system fell apart pretty quickly) so here’s a rough approximation of what you’ll find when:
Late October: The dawn of the blog. The very beginning of my ipilimumab-induced colitis.
November: The worst of it. Colitis, steroids, and infusions. Finding a way to stay sane during it, finding a way out of it. Also, the end of the road for me with ipi.
Thanksgiving: Things get way better.
December: Processing what happened, anxiously awaiting my next scan in early January, celebrating birthdays and holidays.
January: GOOD NEWS. Immunotherapy works.
Throughout: You’ll encounter posts that have little if anything to do with cancer, links to YouTube that may not interest you at all, and a fairly irreverent attitude. Sorry if those get in the way. I’ve needed to write for a long time, and this blog turns out to have been my point of entry.
Anyhoo, thank you for reading – whether you are new here or have been here from Day 1.
It snowed. No, the storm didn’t break any records and I doubt it will have any effects lasting into tomorrow, but it did snow a lot. The powdery kind it’s hard to build with.
We took the kids sledding in the park (officially closed due to the weather, but hundreds of families can’t be arrested for trespassing simultaneously!). But first, we started the day as we do on weekends, with J’s awesome pancakes.
As we sat together eating, Young A piped up: “It’s nice that we are all here together and almost no one is sick.” I asked him who is still sick, because he and Young J both had strep and just finished their courses of antibiotics.
He looked puzzled. “You know, that tunnel thing?” he said to me, meaning the MRI and CT scans I just had.
He didn’t say “cancer.” He didn’t talk about my lungs. But in spite of my insistence that I am fine, he still sees me as being sick. Poor poor little guy. It’s one thing for me not to be able to feel like I’m truly in the clear, but for a kid who’s not yet 5 to also mistrust my health is pretty heartbreaking. I don’t want to let him down by getting visibly sick ever again.
It has not escaped me for the past couple of years that Young J thinks about the future. A lot.
It started pretty innocuously, as a reaction to my refusal to take him to see the new movie version of The Lorax, which was being advertised on the side of buses and subways. I read a review of it which made it sound like the worst piece of crap ever, and since I’m pretty media-averse when it comes to my kids (or at least was, back then, when it was so much easier to shield them), it didn’t seem like a big deal. I let Young J watch the original Lorax film adaptation on YouTube. It was just as depressing as I remembered it to be.
Young J wasn’t happy though. I remember him standing in front of the full-length mirror in my bedroom as he informed me that he was going to “grow up, and get a job that will make me some money, and then I will use some of that money for a house and some of it I will use to go to the movie theater and see The Lorax.”
Those of you familiar with kids with special needs (or child development in general) know that a big focus is the importance of their developing executive functioning skills, which is what enables us to plan, organize, set goals for ourselves, solve problems, and regulate our emotions, among other things.
So, while I felt badly that Young J really took it hard that I didn’t take him to see the movie, I was actually delighted to hear him say something like that. It showed an awareness of the steps needed to achieve a future goal – precisely the stuff of which executive functioning skills are made.
Young J has ADHD, so it wasn’t ever a given that he would develop these skills on his own. And some of these skills – like organization – still elude him. But he has a great and abiding love of the future.
At age eight he has already decided the following:
– He will drive the Staten Island Ferry when he grows up.
– He will live in a house on Staten Island, with some land. And probably also a drum kit.
– He will have a dog.
– He wants to get married, to a woman.
He was talking about these things this morning, and I decided to ask him why he focuses so much on the future (yesterday he drew some detailed sketches of various electronic devices which he’ll have when he grows up – a “MiniPad,” a “Sports Kindle,” and some other things). I told him, by way of contrast, that when I was eight years old, I wasn’t really thinking about the future at all.
This was my diary at age eight:
I just flipped through it to see if I had any forecasts of what I’d be doing as an adult when I was eight. I didn’t actually find any entries from when I was that age at all. I’ve used this one-year diary sporadically over a period of many, many years, writing the year at the top of the page. I did find this entry about goals…
… which I wrote when I was 26.
Young J got the big laugh line today, because what he said in response to hearing about my lack of a future plan at age eight was:
“And now here you are! A librarian who’s trying to find a job!”
Sad trombone! (In his defense, he was being neither malicious nor sarcastic. Just truthful. Ow.)
And you? What did eight year old you make of the future? Or did it take you until 26 to decide?
Things might be about to change. I had a job interview that went really well. I shouldn’t say much more at this point. But some change would do a lot of good. As would some loose change.
I’m pondering giving up sugar once again, as in sugary treats and sugar in my (decaf) coffee. I’ve done it twice now, for a month at a time. I know it’s doable (even though one of the times, I came down with pneumonia after a month). I’ve enjoyed my lack of dependence on caffeine so much, it would be nice to extend it to other addictions.
Yesterday I attended a tribute to a late work colleague of mine, and had a good time hearing stories about her, and also reconnecting with so many people I used to work with. It felt like a piece of my self was reintegrated, being back there – you don’t spend ten years in a place without it insinuating itself into your identity somehow.
While there, I talked to some people who have been following my story here. I am past the point of panic, I think, where someone tells me they are reading the blog and I mentally scan through my posts thinking, “Oh no! They read THAT post! And that one too!” I don’t think that really matters to me anymore. Or, as expressed in the contemporary idiom of reassurance, “It’s all good.” Like a young adult, this blog now makes its way in the world free of my obsessive control. A weird thing to say about something that is, as they say in Italian, un frutto del mio ingegno (a fruit of my intellect).
I guess that part of my work here is to shed layers of anxiety via writing. I hope, for my readers’ sake, that doesn’t mean they are taking on the anxiety for me! If that is the case for you, dear reader, please think of it more like a shed layer of snake skin. It exists, kind of, but it also isn’t needed anymore.
Which, of course, reminds me of this poem:
How to Meditate
by Jack Kerouac
fall, hands a-clasped, into instantaneous
ecstasy like a shot of heroin or morphine,
the gland inside of my brain discharging
the good glad fluid (Holy Fluid) as
i hap-down and hold all my body parts
down to a deadstop trance-Healing
all my sicknesses-erasing all-not
even the shred of a “I-hope-you” or a
Loony Balloon left in it, but the mind
blank, serene, thoughtless. When a thought
comes a-springing from afar with its held-
forth figure of image, you spoof it out,
you spuff it off, you fake it, and
it fades, and thought never comes-and
with joy you realize for the first time
“thinking’s just like not thinking-
So I don’t have to think
Per one reader request, I am still trying to figure out a way to talk about my job hunt while keeping this blog somewhat anonymous (that may not last), thereby preserving whatever shred of employability I may still possess. So many places potentially need me, but they just don’t know it! I try to maintain that attitude when firing off my resume or CV to email aliases that never reply (or auto-reply to tell me to hang on and then never get back to me, or else immediately tell me I’m rejected outright, as though my application were a Viagra ad).
My invitation for an interview this week came directly from a known quantity (aka a friend). That already seems infinitely more auspicious than responding to an ad. I won’t say any more at this point, other than that I am perpetually worried about the lettuce-in-teeth scenario after lunch. But ordering something like a burger leads to burger-hands, and what’s worse?
Another reader asked me to discuss the transition from patient to civilian. This, too, is ongoing, and its manifestations are pervasive. E.g.: I have the oncologist’s office number in my “favorites” list on my phone, where the only other numbers are J’s and my parents’. Perhaps removing Dr P’s number from speed dial would be a decisive step forward. (Or… would it attract the attention of the evil eye?) I’m getting a new phone tomorrow, so I guess that presents an opportunity for administrative changes.
I’m a total hypochondriac these days, too. As you probably would be too, if a sore spot on your back turned out not to be irritation from your bra clasp, but melanoma instead. But the things I worry about are weird and random. Both kids are on antibiotics for strep so you’d think, having been marooned at home most of last week with one of them, who coughed in my face countless times, I’d have succumbed too. Nothing so far (knock wood, spit three times, avoid all sidewalk cracks).
The steroids are almost certainly the cause of a number of minor ills I’m dealing with, even though I’m not taking them anymore. To wit: I have weird vision problems, my eyes take longer to adjust when I go from outdoors to indoors, there are random flashes of light. I have an appointment with an ophthalmologist, but since I fell out with my last one, I am seeing a new one, but couldn’t get an appointment until late March. I hope by then I can still see!
And food continues to be a problem. I keep planning to turn over a new leaf (of kale). I do, but then I undo my progress with something overly indulgent. Perhaps getting a job will discipline me, because I won’t have any time to eat?
The fact is, I need to play the long game against cancer. It will be five years before I’m off the hook and don’t need constant scans, follow-ups, etc. What if another body part decides to get weak and let some tumors take over? My lungs are Paris – I can’t let the rest of Europe fall!
I’m sorry, current events, for using you in such a lame metaphor. But five years?! I can barely remember that far back – Young A wasn’t even around yet (outside my womb, anyway), and now I’m yelling at him every day, when we aren’t hugging and being “friends again.”
I need to go do some interview prep, starting with a census of which pants still fit me. I am sweating the small stuff because it’s what I do best. Perhaps this can be my new rallying cry, and it can become a “Lean In”-style movement.
West Lawn - Room with No View - Shoes on Wires, by Justus Hayes on Flickr, licensed under Creative Commons
Sorry it’s been quiet around here. I can give a few reasons:
1) I’m not really sure if I should write when I don’t have something to say about CANCER.
2) I have a job interview this week!
3) My life when I’m not a superstar cancer patient is pretty routine. I go to the movies, I feed my kids, I try to exercise. I can’t exactly inflict that sort of humdrum on a readership accustomed to more fiery dynamics, now, can I?
It’s not a rhetorical question, actually. There are enough of you who have been reading (and even commenting, which is like gold) who must have an opinion on what you’d like to read about here. Until I start ratcheting up the tension before my next scan (not until March!), tell me what to write about. And I’ll try to comply!
It’s nice here, outside the Cancer Box. Well, I’ll say “nice, in relative terms.” I was looking forward to this being the week where I got myself back on track, food-wise, exercise-wise, looking-for-work-wise.
All of that getting wise pretty much collapsed when Young A came out of his weekend of fun at his grandparents’ with a fever, diagnosed yesterday as strep. My kids don’t get sick often. So a ten day course of amoxicillin, in their world, is pretty close to being sentenced to fifty lashes. It takes an ungodly amount of cajoling and bargaining and reminding “But you drank this yesterday! The same thing! Okay, you can smell it one time” before the dose is finally downed. At least this time around Young A doesn’t require the rewards he extracted from us last time (ten Hot Wheels cars, one per completed day of med). I made sure to schedule his two daily doses when J is around to do most of the cajoling, because that sort of thing makes me lose it quite rapidly, even when I’m not under the influence of steroids. Young A has remained fairly chipper, even with a high fever, but now, on Day Four of his absence from his highly-structured Montessori classroom, he is starting to get annoyed (and yes, annoying). Netflix to the rescue.
In the meantime Young J is asserting himself as a fully-fledged member of the household. Last night I needed to give Young A a bath, and J was out, so I handed Young J the enormous home furnishings catalog we’d received in the mail and asked him to find us some new dining chairs. To my great surprise (because it didn’t occur to me the catalog listed any chairs that would be remotely affordable), he did find some. It was so refreshing to be able to get a recommendation from a eight-year-old which I could take seriously, and which brings us closer to a resolution to our chair crisis. We’ve not been able to invite people over for meals in ages because our chairs (leather covered ones we bought off Craigslist, ill-advisedly, seven years ago) are literally falling apart at the seams. We’ll go try out the chairs this weekend.
I did manage to go to the gym for a class yesterday. It felt good, even when the conversation veered towards Paris. I read a blog post yesterday where the author mentioned a tactic she uses for discussing violent events with her older kid without clueing in the younger ones with too many details. She said that “someone who hates Jews did a very prickly thing in Paris.” Her older son understands this to mean someone was killed. I’ll need to think about it, but perhaps this is the way to bring Young J towards a fuller understanding of world events while keeping the awful details from Young A for a while longer.
All of this reality stuff? Way more complicated than fighting off cancer.
Day One, today. Or was it Day Zero? In any case, it was kind of a busy one, but at the same time there seemed to be a real lack of momentum.
I had to take Young A for an evaluation to see if he needs any support at school. We walked through the bitter cold, but he was dressed to the ears in his coat, snow pants and boots, so he was chipper and excited to be out of school in the middle of the day. He disappeared into another room with the psychologist and his lunch box, and 90 minutes later I had to coax him to leave, since he was in his glory, swimming in a sea of wooden train tracks. He’d eaten all of his lunch.
I spent those 90 minutes with the social worker, answering – or trying to – social history questions about Young A. Does any parent of a child who is nearly five remember when that child first spoke two or three word phrases? Especially when it’s not a firstborn child? I sure don’t. (Mom, I can finally forgive you for not remembering what my first word was.) I couldn’t even be sure if A chews with his mouth open, but I don’t think so. I did mention the cancer, since it affected Young A when I was sick.
I had a meeting at the school later in the afternoon, about a project I’m working on there, so I had about two hours to kill. I totally squandered them on things that don’t really apply anymore – bad eating and excessive bed rest. It was so cold I told myself I’d get in bed to just warm my feet up and take a 20 minute nap. I wound up not actually sleeping but just lying in bed surfing the web on my phone. Net gain: I fell asleep while watching TV tonight. I need work on getting upright again. I hit the gym once this week, planning to make it a habit, but my schedule made it impossible. Or rather, I convinced myself it was impossible.
I’ve fallen into some bad habits or patterns of behavior. The scale doesn’t lie, so I shouldn’t either. This weekend – a kid-free one, as J and I belatedly celebrate our anniversary – doesn’t seem like the optimal time to be turning over a new leaf. I’ve heard from some people that I should give myself a break. But part of me feels like that’s exactly what I’ve been doing all these past months, and it’s time to get tough. I’ve succeeded before – giving up all sugar for a month at a time, losing weight, upping my exercise routine – so there’s no reason it can’t happen now. I should do it, even though it seems like a huge cliché to make these types of self-improving resolutions at this time of year.
But… didn’t I just achieve my resolution for this year, and in record time?
Murderers murdered cartoonists in Paris and escaped. The Frederick News-Post put itself on the map.
A woman in front of me at the supermarket this morning wanted to buy a pocket pack of Kleenex and the store didn’t have any for sale. I took my brand new one out of my bag and handed it to her. She said, “I hope someone does something nice for you today.” I told her I hoped so, too.
When we arrived at the cancer center, I saw my buddy Quentin. He was wearing a mask, as was another one of the greeters. I asked why and he explained that he hadn’t had a flu shot, so he had to wear it. I didn’t question him further. He said he’d had a nice holiday and also been to Barcelona. Good for him!
Upstairs, the receptionists both wore masks. I haven’t had a flu shot either so I wondered if I should ask for a mask. I didn’t.
I had to wait an excruciating hour or so to get the results. Once I did, I asked to see my scans.
Yeah, it’s hard to understand and the tumors aren’t where you’d think they are on the image, but the point is: THEY SHRANK. Just like they were supposed to. The largest ones measured over a centimeter before and they are now measured in millimeters, very few millimeters. My immune system is kicking their little tumor asses. I hope your immune system is never tested in this way, but if it is, I hope yours is as ninja-like and unsparing as mine.
I said “tumor” in an Arnold Schwarzenegger accent, and Nurse Practitioner K (who was so happy to give me good news today since she’d been the one to break the bad news in September) laughed. Dr P came in and suddenly I found myself with the nickname “The Tumornator.” I’ll be back… (in twelve weeks, for a new scan.)
J and I called our parents to share the good news, then left the cancer center to have lunch. I had been postponing my date with my most-dreamed-about Japanese food, chicken katsu don, and we went to what turned out to be one of the best places in the city to get it. I ordered a very large beer that took me ages to finish, but was so satisfying. I ate and ate and ate (free refills on cabbage salad) and smiled at J and squeezed his hand and received many messages of support via social media.
When we stumbled out of the restaurant and walked through Midtown I felt like a tourist. Snow was blowing around like the inside of a snowglobe, and there was very curious light. Sadly I couldn’t capture the light just right, or the whirling snowflakes, in my photos.
(Personally, I’d want no part of a heaven that included Rev. Moon.)
Passed this jewel box of a firehouse on 43rd Street.
Now, off to do the perfectly routine thing I scheduled for this afternoon, and get a haircut.