on being seen

It's been a tough few months. OK, a tough few years. But for now, a tough few weeks.

I've been feeling the most sick I have felt since this all started and there are no answers yet, even though I have some people on my "health team" who I have to keep remembering do care and are trying to help. They're now thinking maybe it's Sjogren's, so I'm slowly getting tested for that (so far it's a bunch of negatives). School started, and I have to muster all of my happy energy to welcome new and returning students. My husband is traveling for work a lot this month. We lost my mom in February and his mom just a few weeks ago, also to cancer, so there's the not-knowing how to support someone when your relationship is already not as good as it could be, when you coexist in the same house but don't know how to do marriage any more. Sometimes I'm not sure what I can tell whom, whether work friends are life friends or just work friends or somewhere in between. My older kid is a senior in high school this year, and today was the first day of school, I'm starting to grieve what I know will be a hard transition. It's a lot for anyone, and as my therapist pointed out, when you're depressed, you don't really cope very well.

And then there was this morning.

A few months ago, the gas station on the corner of Cherry Valley and Route 206 was bought by a lovely young guy whose name is Sunny. He's from Pakistan. I only share that because it's important to him.

The first time I met him, he was so excited to introduce himself, to welcome me to his business. It was the most awesome gas pump visit ever. And so the next time, I greeted him by name. It made him smile, and it made ME smile, and now he calls me "my dean." When I drive up, he says "hello, beautiful!" We always have actual conversations: about people, about families, about religion, about mental health (his brother is a therapist), about life. He says he loves coming to work because he loves all of the people he meets, despite the insane hours on his feet. I met his mom and sister in Pakistan on a Facetime when I happened to be there one morning while he was on a call. I told them he was famous. He's met my daughter, and lectured her on the importance of mothers in your life. He introduced me to his wife, who is finishing her degree in social work; she's interested in end of life care, and we talked about the real need for this role in eldercare. He offers me coffee, and I always politely decline, because I've had my one cup, and then he offers me water. It's an unlikely and probably not very deep but heart-warming relationship, and I always drive away smiling.

Today was a particularly tough morning. I've been especially depressed and hopeless the past few days. My vision has been so bad that I thought I was going blind yesterday. I woke up feeling like crap, with a headache and feeling like I was going to be sick, was trying to decide whether to go get my blood drawn to check my sodium (because that's the only way you can check it and those are symptoms of hyponatremia to which I'm now prone thanks to my medication for diabetes insipidus), and noticed I needed to get gas. So I went to Sunny's.

I didn't see him when I drove up to the gas station. He recently hired someone else, so I thought maybe I'd end up with the new employee pumping my gas. But just as I was settling into that possibility, there he came, running up to my car from somewhere I hadn't seen.

"Hello, beautiful," he said, sticking his arm and head into my open window. He thrust a bottle of water past the passenger side to me. "I saw your car drive up and I grabbed some water for you."

As he walked away to start the pump, I clutched the Poland Spring to my chest and started to cry. (Which is always a relief because sometimes my eyes are so dry they don't even make tears.) And of course I was still crying when he came back to start his conversation.

"What's wrong?" he asked, genuinely concerned. I shook my head, still clutching the bottle to my chest. "What's wrong? Tell me, friend," he urged.

"I've been sick for a long time, Sunny," I managed to say. "It's OK. I just really needed this kindness this morning."

"Tell me," he said again, gently, holding out his hand over the passenger seat. I grabbed it with both of my hands, held it.

"It's OK," I said. "I have a therapist."

"Friends are more powerful than therapists," he said. "I get off work at 11. You come."

"I can't," I told him. "I have to pick up my kids after work."

"I will be waiting," he said. "You come." And he ran to take care of the next customer.

~~~~~

That would be a good end to the story. But there's more that matters, I think. 

So I went to get my blood drawn, and on my way out, I got a text from one of my colleagues, with whom I'd spent two hours in close contact last night at a college sponsored event that I have to co-host. After feeling not great last night, he tested positive for COVID this morning.

I felt so angry again. I'm already sick. I'm already trying to spin many plates alone. I'm running on empty. I can't afford to get COVID right now.

My work guidelines say that if you're exposed, you come in anyway, and wear a mask. You test on day 5. So into work I went, texting everyone I knew I'd see, trying to do damage control from the event last night, trying to plan for the week ahead just in case. I canceled plans to visit my high school English teachers, whom I haven't seen in almost a year. I let my therapist know so she could tell me she wants to be virtual next week.

I went to my office, closed my door, sat down, and drank my Sunny water.

A knock came. One of my colleagues.

Who dropped a brown paper bag on my desk with a single chocolate chip cookie, and a note that said "While it won't remove all of the annoyance, hopefully it came bring a smile."

So here I am crying again.

Because sometimes it is so hard to try to communicate all of your needs when there are so many freaking needs, and you feel like you're completely exhausting because you have so many needs, and when people just SEE you without you needing to say a word, it breaks your heart wide open.

and then

I had titled this blog post a long time ago. I don't know what I was thinking when I did, but it seems to fit ... the continuation of something, but not clear what, and no end, just leaving us all in suspense.

and then --

No, I'm actually not OK.

Two opthalmologists and a neuro-opthalmologist say there's nothing wrong with me, and yet I can't see right. Things are randomly blurry. My eyes hurt. I can't read past the floaters. The ringing in my ears is out of my control. The dripping down my throat is out of control.

The endocrinologist I was supposed to see two weeks ago in Philly for a second opinion about the pituitary condition potentially triggered by the concussion and causing dehydration called while I was 20 minutes away and had to reschedule to this week. My mammogram last week, which was supposed to be a two part mammo-and-ultrasound (which is how it always happens for me), got completely fucked up so now I have to go back in for second imaging and then an ultrasound on yet ANOTHER day. I saw a THIRD ENT last week, who said he'll treat me like everyone else (he doesn't think it's a CSF leak) and just suggested sinus surgery. My physiatrist, who I thought was the only one who actually gave a shit about my case and was trying to put the pieces together, after I sent her an impassioned plea through my portal to ask who can help, told me in a one line response to "send her an update" when I schedule my sinus surgery. Today, because I am truly fucked, the gastroenterologist I was supposed to see in May (for my first colonoscopy, after my second parent now died of GI tract cancer) called -- they're out on medical leave -- and rescheduled my appointment to July. 

At the end of every appointment, they all say the same thing: "call me if anything changes."

Except that's why I called them in the first place.

Because things have changed, and I am not OK.

Because I am not OK, I called a therapist. She is out of town, but will see me the 17th. I talked with her on the phone, and she sounds kind. If I can make it to then (I can make it to then, right? It's only five days from now) I will pay her to care about me, because no other health care provider does any more. She was concerned enough about what I was saying to her that she referred me to see a psychiatrist ASAP to be "cleared." I called his office. His earliest appointment is the 26th.

But if "anything changes," I should go to the ER. Which will tell me I'm not an emergency because I'm not having a heart attack. I know, because I've been there before.

Friends, I am not OK. This is all not OK, because I am definitely not OK.

and then --

Mostly OK, and Thai Butternut Squash Soup

It's winter here in NJ, the winter that we never had in December, January, or February. 

My mother died on February 15th, just four days shy of 20 years after the day my father also died of cancer, and yesterday my brother and I were supposed to inter her ashes, except there was a nor'easter in Mahwah, where the cemetery is, so that was a non-starter. So instead we're going on Friday, when it's only supposed to rain. My mother, who was like my own personal Weather Channel (she'd always call -- no matter what precipitation was falling from the sky or the wind was blowing -- to speculate on the catastrophic conditions she was sure were unfolding wherever we lived) is definitely having the last laugh.

I'm mostly OK. There are moments when I almost go to call her and realize I can't. We'd only see her once every few months before her diagnosis, and I didn't see her that much more in the months after her diagnosis beyond the times I was driving her to appointments (which were not many, because my brother shouldered the bulk of that burden), but it was hard to not be there as much as I thought I should be there during those last days, and I miss just knowing she's out there. I've gotten some lovely flower arrangements, and lots of cards and kind words from friends and people who knew her and loved her, and I almost feel guilty for not feeling more miserable all the time, just as I felt guilty about not feeling more constantly miserable when my father died. Those cards and flowers make me feel even worse, in a way. I almost want to feel what they expect me to feel. Maybe it's even sadder that I can't right now. Maybe I will feel more miserable later? I know there will be spaces that feel unfilled when we all get together and she’s not there.

It is weird to be an orphan, completely untethered to living parents, but also ... family is complicated, you know? I loved my mother but home was a hard place when I was growing up and I would not say that I had a happy childhood. There were reasons (besides a good fellowship offer) that I left to live on the west coast for grad school, and there were many moments, even as an adult, when I wondered (and I realize how self-centered this sounds) if my mother saw me for me or cared enough to find out. She was a good person (and in fact a lovely person for so many people; she could talk to a lamppost and I know she made others feel good in her chatty way), but she was not a person I ever confided in. She offered no barrier between my father and me. Sometimes I couldn't be sure if she ever heard me at all when I talked to her ... there were so many times when it felt like she just kept right on talking. It wasn't a kind of relationship that invited confiding.

It feels particularly wrong to think about things this way right now when I feel like I should just be sad and only speak positively about a parent I've lost, but the past is bound up in how I feel about the losing ... it can't not be.

As my brother and I were cleaning out her apartment we found my mother's journals of the year after my father died, which I read voraciously, hoping for something that might help me make sense of my complicated feelings of sad and hurt and everything else, but most of it was about food (things she cooked and things she ate at restaurants and things she felt bad about eating and how many weight watchers points they were), and my brother coming to do maintenance on her house, and her annoyances at “lazy” kids in her classes, and news of her teacher friends from school, and her activities at church, where she was very involved.

So sometimes I wallow in whatever it is I'm trying to sort out. Other times I'm back to making appointments to try to sort out my own health, now with the additional risk factor to report of a second parent dying from the same general kind of cancer. The latest addition to the constellation of my crazy postconcussive symptoms is pain behind my eye and what I can only describe as dimming vision, which is not a retinal tear (I've been assured of this by not one but three ophthalmologists) but could be optic neuritis, caused (?) by the past-nasal drip I've had for two and a half years but since my ENT — my second — isn't willing to do anything about the drip (which is caused by ... who knows? a nerve that was injured in the concussion? septum that was deviated when I hit my head and face?) because it's not bad enough (despite the fact that my ear is often clogged and painful and I’m often off balance because I am probably experiencing chronic infections). And since ophthalmologists don't look at optic nerves (you apparently have to go to a neuro-ophthalmologist for that) I get to wait until April 18 which is the first appointment I could get in Philadelphia, the only place close to me where one can see a neuro-ophthalmologist. By which point I could be blind and it honestly feels no one gives a shit. 

I literally sound like a crazy hypochondriac even when I listen to myself.

I also finally got up the courage to see my ob-gyn, which I'd been putting off for two years because my last appointment felt so completely dismissive, only to be told that my excessive menstrual bleeding all. the. freaking. time. these days (really ... I had three days of not bleeding since early February) is "likely just perimenopause." Which feels not reassuring at all to someone who has just had a second parent die of cancer.

On second thought I guess I'm not really as mostly OK as I say I am. I'm a hot freaking mess.

~~~~~~~~~~~~~~~~~~~~

Thai Butternut Squash Soup
(made a while ago and adapted from the NY Times, and probably what I should be making for myself tonight, both because it's acting like winter and because I could use something warm and comforting. Except I am tired of cooking, too.)

4 T. coconut oil or neutral-tasting oil
3 medium shallots, diced
1 (2") piece of fresh ginger, peeled, thinly sliced
1 lemongrass stalk, cut into 3-inch pieces
Kosher salt
2 medium butternut squashes (about 4 lbs.), peeled, seeded and cut into about 3/4-inch cubes
2 (13.5 oz.) cans coconut milk
4 T. Thai green curry paste, or to taste
3 T. fish sauce (or soy sauce for vegetarians)
3 to 4 c. water or chicken stock

FOR THE GARNISH:

¾ c. raw peanuts
¾ c. unsweetened raw coconut flakes
2 T. fish sauce (or soy sauce for vegetarians)
8 small dried red chiles, thinly sliced (optional)
1 T. neutral-tasting or melted coconut oil
1 T. minced lemongrass
1 t. sugar
10 lime leaves, thinly sliced (optional)
Handful of Thai or Italian basil leaves, or cilantro
2 to 3 limes, quartered

Heat oven to 300 degrees. Melt oil in a large Dutch oven or soup pot over medium-high heat. When oil shimmers, add shallots, ginger, lemongrass and a generous pinch of salt. Reduce heat to low. Cook, stirring occasionally, until shallots are tender and just starting to brown, about 18 minutes.

Add squash, coconut milk, curry paste, 3 T. fish or soy sauce and water/stock. Increase heat to high. When liquid comes to a boil, reduce to a simmer and cook the soup covered until squash is tender, about 25 minutes.

Make garnish while soup cooks: In a medium mixing bowl, toss together peanuts, coconut flakes, fish or soy sauce, chiles, 1 tablespoon oil, the minced lemongrass, the sugar and the lime leaves, if using.

Spread mixture out onto a baking sheet in a single layer. Bake for 18 to 20 minutes, stirring every 3 minutes after the first 10 minutes. Remove from oven when coconut is deep golden brown, and pour mixture immediately into a bowl to prevent overcooking. Stir to combine, and set aside.

Remove soup from heat. Remove lemongrass stalks from pot. Use a hand blender to purée soup. Alternatively, transfer soup in batches to a blender or food processor and purée. Taste and adjust for salt and curry paste. Add water or stock to thin soup to the desired consistency.

Thinly slice the basil leaves or cilantro and arrange on a small plate or platter, along with lime wedges and peanut mixture. Serve soup hot with garnishes.

Pick Me Up: a Story of Losing and Love in Isolation, with Honey Snack Cake

Trigger warnings: loss, pregnancy loss, cancer, COVID, hospice, etc. etc.

Back in August, right before school started, my mother was diagnosed with stage 3 esophageal cancer. They caught it early enough, the doctor assured us, and we agreed on a chemo-surgery-chemo sandwich, depending on how things might go. 

My mother, always a cheerful and compliant patient (through back surgery, knee surgeries, bunion surgeries, and more hospital visits than I can count) embarked on the journey with her Rollator, mostly chauffered by my brother (who has been her caretaker these 20 years since my father died), sometimes chauffered by me. The last scan before surgery came back good: no evidence of the mass. She prepared for surgery to remove any last vestiges of the cancer.

And then, the week before it was supposed to happen, found herself in back pain again, so weak she couldn't leave her bed. She fell, twice, and was taken to the hospital. They encouraged her to eat, discussed rehab to get her back in shape for surgery. I went to visit on Saturday with my daughter, and she looked like she was returning to baby-hood. It didn't look good, worse than I'd seen her in a while.

Saturday night my daughter had friends sleep over for her birthday. And on Sunday morning, I woke up feeling miserable, and tested positive for COVID.

We called the parents to pick up their kids. My daughter cried, claiming her friends would hate her now, it was such a sad birthday. I began isolation in our bedroom, thinking good lord, now I've exposed not just my daughter and her friends but my own already-immunocompromised mother and the entire freaking hospital to COVID (I was masked of course, but we know that's not 100% perfect).

Sunday night my brother called. The cancer had in fact spread, and my mother was dying. It didn't even matter that I'd exposed her to COVID. She would return to her apartment this week for hospice care.

So here I was, stuck in isolation, quite ill with this stupid virus, hacking up a lung, while my brother was stuck moving my mother to hospice alone, coordinating nurses and aides, ordering a hospital bed, doing logistics.

I called my mother every day. Twice a day. It was all I could do. She has never figured out video calling (she is obstinate about technology, despite her compliance in all other ways), so I'd talk briefly with her until she was tired, telling her when she sounded more or less loopy and trying to entertain her with thoughts of things other than death, encouraging her to drink water, to eat so she could stick around long enough for me to see her.

By Wednesday, the day of her move, I felt so helpless and desperate I didn't know what to do with myself. My brother said I should start thinking about when I was going to come up. He said she wasn't doing much to sustain herself. What should I do? I asked him. I'm COVID positive. I'm not just a little symptomatic; I'm actually really, really sick. The urgent care put me on Paxlovid and walking felt challenging. I just wanted to sleep. I wouldn't trust myself to drive down the street right now, even if the other stars aligned. What should I do?

Of course, it's February. The month my father died, the month of my pregnancy losses. The irony of all of this is not lost on me. I determined that if I could do nothing else, I would get her to eat.

So I did what any other self-respecting human stuck in isolation while their mother is dying in hospice would do: I ordered GrubHub.

Tiramisu, I decided, was something she could eat. Soft, sweet but not sickly, loaded with calories. She mooned over an icee she'd had in the hospital; this would be better. I did the best I could with directions to her apartment in the senior living facility, and then realized the driver would never be able to figure out how to get in. I texted him my life story, weeping, telling him he was bringing tiramisu to my mother, dying in hospice, because I couldn't be there, because I was stuck in isolation with COVID. I told him he was not just delivering food, but delivering a blessing. He texted back: "don't worry I will do the best."

As I watched the little GrubHub car approach her place on my phone app, I texted him, asked him if he needed any help getting in. "Nope," he replied cheerfully. "I'm in!"

I cried. I thanked him profusely. I gave him the biggest tip he'd probably ever gotten from a single small delivery. He told me I was kind, that it was his job. I told him he was the kind one, that I was so very grateful.

My brother reported she ate half of it, more than she'd eaten of anything else in days.

At this writing, my mother is still alive. I don't know how many more days she will be on this earth. Maybe she is waiting until the 20 year anniversary of my father's death on the 19th to make this shitty month's irony absolutely complete. But I will always be grateful to the GrubHub driver, who helped me to feel a little less helpless in my COVID prison, whose tiramisu was a literal "pick me up" when I am coming to terms with another loss.

I've always included a recipe in my posts. Maybe it's a little weird to do that now, but this is something alone the lines of what my husband left as breakfast outside my door this morning, which he made last night. Things are going OK down there without me, I guess, regardless of the fact the Universe is completely shitting on me in other ways.

Honey Snacking Cake

3/4 c. runny honey

1/4 cup light brown sugar

1 large egg

1/2 c. canola oil

1/2 c. buttermilk, well shaken

1 t. vanilla extract

1/2 t. ground cinnamon

3/4 t. kosher salt

1 1/4 c. all-purpose flour

1 1/2 t. baking powder

1/4 t. baking soda

1/2 c.  sliced almonds

Place a rack in the center of oven. Preheat oven to 350 degrees. Spray and 8-inch square pan with nonstick cooking spray. Set aside.

In a large bowl, whisk honey, brown sugar, egg, oil, buttermilk, vanilla, cinnamon and salt until smooth.

Add the flour, baking powder and soda and whisk until well combined.

Pour the batter into your prepared pan, tapping the pan lightly on the counter to release any air bubbles. Smooth the top with an offset spatula. Sprinkle the almonds on top, if desired.

Bake until the cake is puffy and lightly golden, and a tester inserted in the center of the cake comes out clean, about 25-35 minutes. Cool the pan on a wire rack for 15 minutes. Serve warm or at room temperature. Will keep well wrapped at room temp for up to three days.

Notes (from Yossi's cookbook Snacking Cakes)

You could double the ingredients, skip the almond sprinkle and bake this in a 15-cup bundt pan, about 40-50 minutes. Let it cool in the pan for 10 minutes and then invert it onto a wire rack to cool completely. You could also use a 9x5x3-inch loaf pan, use only 1/4-cup of the sliced almonds for the topping and bake until a skewer inserted in the center of the cake comes out clean and the loaf is puffed and lightly golden brown, about 35-45 minutes. You could also bake it in a 9-inch round pan until a skewer inserted in the center of the cake comes out clean and the loaf is puffed and lightly golden brown, about 30-40 minutes.