Since You Asked: How I Am Doing Since My Husband’s Cancer Diagnosis
People have asked how I’m doing so I thought rather than smile and deflect or hint and evade, I’d do something different. As Joan Didion described in her classic 1976 essay, Why I Write, “I write entirely to find out what I’m thinking, what I’m looking at, what I see and what it means.” When people ask, I’m not cagey on purpose; it’s because I don’t know the answer to even that seemingly simplest of questions: how am I? Didion’s words resonate as profoundly true to me, especially the latter part of the sentence as we, meaning my husband and I, have entered altogether new territory with his leukemia diagnosis a month ago yesterday. What am I looking at? What do I see? What does it mean? It changes by the minute, which creates a disorienting lag time between my brain and my feelings.
A lot of the time, “how am I” gets filtered through my body in an odd way that is becoming less odd over time. If you are wondering how I’m doing, here’s something I could describe: I have these micro-moments every day where I have to stop and just blink in stupefied disbelief. It can be when I see the letters on the wall of the hospital where John is getting outpatient care and I see the letters o-n-c-o-l-o-g-y in that order. It can be in the moment when something unexpected catches my eye and it’s my husband’s PICC line, a catheter that’s wrapped in mesh in his left arm. It can be when I see the cups of Trader Joe’s ramen soup in our kitchen, leftover from when John was in the MICU and then the hematology sections of Loyola, brought home with us along with the clothes he walked in with, a binder of information from the hospital like he was welcomed onto a cruise and a bag of medicine. It can be when sad-eyed people offer their condolences — well-intentioned people, I must add, kind people, who are hampered by our miserly language around this kind of life event — even though John is still very much still here. Or it could be the several times a week we drive to something called The Cancer Center at the medical complex. [As I write this as of today, it will be just once a week. Huzzah!]
My husband has cancer. Specifically, he has leukemia. More specifically, he has the Acute Lymphoblastic Leukemia variant, also known as A.L.L. This is usually the kind children get when they get leukemia but for some reason, it staked a claim on my husband. It’s not kid-sized, though.
Back to those instances, though, those blinking, wordless moments. When they happen I get shaky on my feet and I feel like I am sleepwalking in someone else’s bad dream or I’m on a wobbly boat or something. It’s a destabilizing moment where I feel like I have to reach for a railing, a chair, a shelf, anything. But I don’t faint; it only lasts for a second or two and, besides, I’m not a lady from an old-timey movie. When those out-of-body moments hit, it reminds me of that old carnival ride called the Rotor where the ride starts spinning super fast and the floor drops out, pinning you to the wall with sheer centrifugal force. Just, wham, up against the wall. In my head, I call these moments “the whirlies.” Sometimes it’s not that dramatic and I just feel like I have to shake my head like a stunned character who’s just been hit with a frying pan in a Looney Tunes cartoon to return to normal. Shake it off.
This is my new normal, though, if you’re wondering how I’m doing. As a writer, I think the word “surreal” is hackneyed to the point of uselessness but it is exactly correct for my life now.
The truth is that my otherwise healthy, handsome, very-youthful-for-62 husband suddenly has this hostile, take-no-prisoners invader in his blood, cooked up in his very marrow. [There. I just got the whirlies as I wrote that, just so you understand.] In November of 2018, we were climbing a mountain in North Carolina, taking a picture at the same spot we’d climbed to about 20 years before. We were happy and maybe a little smug that there was no noticeable change in how we took on Chimney Rock all those years later. By the last day in February and into March, just a few months later, John was plugged into an I.V., getting a massive amount of white cells removed every day, having MRIs and receiving round-the-clock medical care from a phalanx of doctors and nurses.
The good news in all this? He was released from the hospital by mid-March (a full week or two earlier than was predicted by his admitting doctor) and he is able to continue his treatment as an outpatient. This is actually excellent news. Even better? His prognosis is generally optimistic. I’ve learned that doctors are loathe to say much except they are very pleased, in a reserved, clinical way, with how he is responding to the treatment so far — which, through the roll of the dice, ends up being a very targeted medicine — and while he must get a bone marrow transplant when he’s in remission, that is not expected to be too difficult, though it entails a 3–4 week hospital stay.
When people ask how John’s doing, I often say, “So far, so good,” and compulsively look for a wooden surface to knock on. (These things make you superstitious and irrational: Check out The Year of Magical Thinking by Joan Didion to understand better.) [What is it with Joan Didion and this?] It is a tentative but grateful acknowledgement that things could be far worse. I’m not being willing to jinx it so I must knock.
So how am I doing?
This is the shapeshifting truth of it: I’m okay except when I’m not, which is often. I have terrible moments that make me shake in tears and I have many more moments of relative normalcy. From Feb. 28 until I wrote this, I have white-knuckled through the worst of it with as much of a stiff upper lip as I can muster but now that John’s home and we have relaxed into something approximating our old normalcy, there are cracks as what’s been dammed up begins to breach the walls. I felt a little of this the other night when I saw friends for the first time in a while — I really have not been out much since this all started — and I couldn’t stop crying and had to leave early.
Sadness is a huge part of how I’m doing. Fear is another. I have always been dialed toward anxiousness but the diagnosis has kicked it into overdrive, especially grabbing at my throat in the middle of the night. (Yes, I practice meditation, yes, I practice mindfulness, and I would be far worse without them.) Counting out syllables of sentences on my fingers seems to be the only thing that calms my mind, but I have to keep doing it until the last syllable lands on my thumb. [I have no idea…] Being so keyed to vigilance now, the fear emerges at weird moments, and I feel my pulse suddenly race at a phone ringing or being unable to find a spot in the hospital parking lot when John has an appointment. This adrenaline is ever-ready to pipe into my chest, my limbs. When the anxiety has dissipated, when the phone call isn’t disastrous news and the spot is found in the parking lot, my body is spent and tired and, blessedly, mercifully, I feel nothing for as long as that lasts. And then there are the times, sitting at dinner, ranting about Trump, laughing at a series on Netflix together, or just sitting here writing this by myself, when things are almost perfectly normal.
I mean the old normal, our and my old normal. And I definitely mean “almost.” That’s an important word there.
Because this thing, this disease, this demon, lurks here now. There is no forgetting that, at least not at this stage. This, along with the regular upkeep of fighting this thing, means how I am doing can change on a dime. It means that for the most part I am fine. And not at all fine. I hate having my emotions in the driver’s seat when I already feel so out of control, but that’s where things have landed at the moment. It doesn’t mean I’m not strong — I am — but I am yielding to this greater force for now.
So if you see me and you ask how I am doing, this is the messy, unruly, disorderly truth of it. If emotional erraticness makes you uncomfortable, it’s best to email or text me. (I completely understand.) I may be laughing one minute and crying the next or the reverse. I could be exhausted and not wanting to talk about it or I could really be eager for someone to talk to about things.
Does this help?
So this is how I am doing. Thank you for asking.