3.5 people in this room are quietly crying and i am the .5

The Cancer Journals, Part Two: in which I experience the busiest month of my professional life while helping my mother move into my house, managing her cancer care, cooking meals for everyone, & becoming more self-pitying than you ever thought possible.

This post isn’t so charitable toward my mother, but I needed to write it in order to survive. If you know her, kindly don’t mention the existence of my blog, OK? Everyone needs to vent, and I need to do it publicly because secrets make me feel sick and I’m not good at understanding where “secrets” end and “discretion” begins.

Part One is here. 

Let’s go!

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December 1 st.

Eighteen years after I moved out, when I was eighteen, she moves in.

I meet her flight at the airport. She’s not as weak or thin as she seems, though I soon learn that she weighs 105 and wears the baggiest clothing imaginable, and lots of it. We watch The West Wing and eat pumpkin pie.

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December 3rd.

In the car on the way back from the doctor’s office in Manhattan my mother calls Judy. They talk, she was right, no less than five times a day. It’s insane and hilarious in about equal measure. I hear the following:

“What? A documentary about penguins? You feel bad for the penguins? Why–are they in zoos? Because it’s cold? Judy…Judy, they’re equipped to deal with it, you know?”

and:

“Judy, I just can’t thank you enough for feeding my squirrels.”

She hangs up and there’s silence from the back seat for a while. Then a lot of rummaging noises. Then her voice fills the dark car:

“You know…I bought this purse because it has a lot of compartments, and I made more compartments in it by putting in little bags and things, because I like a lot of compartments. But sometimes…I don’t know. Sometimes I think it has…too many compartments.”

We saw the doctor mostly as a favor to a family friend, a muckity-muck in the NYC doctor world. The doctor is a surgical oncologist at Memorial Sloan Kettering who tells my mother what we knew: she isn’t a candidate for surgery. He approves of the doctor I’ve selected, at the MSK office in Sleepy Hollow. Sort of a waste of a trip, but it’s always good to ask multiple doctors all your questions. I’ve researched everything the horrible Chicago doctors told her and have decided that their treatment plan is a piece of shit, so I go in with a big argumentative list of questions for the MSK doctors. Before I can get to them the oncologist says that the previous diagnosis was a piece of shit and outlines a new treatment plan that was exactly what I was going to propose. I tell him that he should be happy to know that the internet agrees with him and he stares at me and tells me that that’s because MSK is conducting the research I was reading. He’s impressed that I know words like “unresectable” and “folfirinox.” I tell him I know all the words, and ask him how concerned I should be about the hereditary nature of our BFF PanCan and he says not very, because the hereditary strains of it usually present in younger patients and also there is absolutely no screening for it so what’s the use of worrying.

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December 4th.

Harriet calls her and while she’s talking she gets another call. “Harriet, Harriet, hold on, I’m getting another call. … … … Harriet? Are you calling me on your cell phone right now?” Her desire to talk to my mother is so intense that she had a backup phone line predialed in case my mother somehow didn’t recognize her number on one phone she would pick up the other call. My mother tells me this isn’t the first time Harriet has called her on two lines at once. I can’t imagine having phone relationships like this.

We go to the doctor who will become her doctor, in Sleepy Hollow. One hour and 14 minutes from our house, not too bad. Easily half an hour quicker than the NYC MSK offices. We discuss the distance, knowing we’ll be going a lot.

At the doctor’s office I write:

As I write this my mother is having blood drawn two feet from me I hate blood I’m toughening up everyone at the shop is making chocolates I’m an hour+ down the road. My mother tells the nurse I hate blood  can’t stand the word “vein” I tell them I’m toughening up and Debbie the nurse says I’ll get tough real fast then she shows us the model of the plastic bit they’re going to implant in her for the home portion of the chemo and I want to cry forever but I just keep taking notes. when we’re waiting for the doctor to come back my mom starts doing yoga stretches so I do too.

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In the car on the way home she recites a little of The Tempest, because the name of her chemo drug reminds her of it. Folfirinox. A portmanteau. Five tidy poisons in one. Do poets come up with these names?

First December day in ten years I didn’t do a lick of chocolate work.

Full fathom five thy father lies;

Of his bones are coral made;

Those are pearls that were his eyes:

Nothing of him that doth fade,

But doth suffer a sea-change

Into something rich and strange.

December 9th.

you probably know about medi-ports because it now appears that everyone in the entire known universe has someone in their lives with cancer.

in case you’re in the .0001%, i.e. if you’re the me of 27 days ago, that’s this horrid disgusting plastic thing they implant into you so you can get chemo through it at home. you can do all kinds of things with it! blood draws, IVs, hard drugs, etc.

so versatile.

you carry your poisons around with you in a fucking fanny pack for two days, after a day of chemo at the facility. then on the third day you go back and they take the needle out of the medi-port.

i’m in a very beautiful facility in harrison, new york, at yet another MSK facility       they have them scattered around the ny area like death-confetti      while my mother has her mediport put in. she’s terrified about it, who wouldn’t be? bodily integrity violated.

there’s an ice storm outside. on the drive down i couldn’t stop talking about how beautiful the trees are.

this building opened two months ago, it looks like the set of fucking mad men. all blonde wood chairs and couches that look like my couch at home made by that guy…what’s his name? not eames not heywood wakefield, the other one. couches with no wasted energy, clean lines & you have to add about 10,000 pillows in order to be fairly comfortable. cancer must be the most fucking lucrative business in the fucking world what a fucking posh waiting room

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as i was typing that paragraph the woman next to me just said “we have to move, this chair is a torture chamber.”

but the lines

are truly beautiful.

there are ten of us in this room and three point five of us are quietly crying. i am the point five. i have too much to do to be all the way crying. or properly punctuating my sentences

everyone in my life is being so amazing to me it makes me realize i need to be more amazing to everyone in my life.

kate came to work last night and made my mother and i coconut curry and summer rolls with peanut sauce while i made latke bonbons and my mom wrote a cover story (3000 words my friends) for her paper.

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my mom is still working. can you even. she’s doing interviews from my house and writing stories from the couch at the shop and filing stories via email.

chemo starts tomorrow.

mccobb, that’s his name. couch guy.

i’ve been doing a lot of funny things lately. like making truffles with weed in them. that’s weird, for me, who’s basically straightedge just because why not. man it stunk up the whole kitchen! ultra low THC, won’t get you high at all. she was taking this appetite suppressant derived from cannabis but the side effects were terrible (“I’m too old to be this high!”) so I said, fuck it. asked the doctor his opinion on marijuana vs marinol and he said– do whatever works best for her. marinol is too strong for a lot of people. So we’re doing something more mellow.

here’s what it looks like to be running a chocolate shop in december plus being the primary caretaker for your mother with cancer:

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everything at once all the time always.

i’ve already mentioned how great everyone at the shop is being, right? how they keep coming up to me and asking if they should work later or come in earlier, how they will listen to me vent without complaining, have patience when my words won’t work to explain something because i’m so tired i want to scream and so frustrated i want to cry and so hungry i want to punch something?

after the doctor i go to work for a bit and before i leave i pack up peanut butter cup boxes named for my mom (Pauline Benjamin, get it?) to give to the people who will tomorrow begin the process of pumping poison into her.

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December 10th. 

Our home hospital: Sleepy Hollow MSK. First chemo appointment. I am more of a human today, so I can capitalize and things. Not crying in bathrooms at every chance. Less of a human, maybe?

She weighs

one oh three

how is that even possible. she’s 5’9″. I’m 5’8″ and 113. Those ten pounds are a huge difference on our stupid little bird-boned bodies. One of her charts from Chicago lists “anorexia” as one of her symptoms. It shocked me at the time but after living with her for a few days I get it: she just can’t do it. Nothing appeals. The tumor is right there, you know? Pressing. The doctor stresses the need to eat. Tiny meals throughout the day. I’m so on it, but her sadness at not wanting to eat makes pushing the subject tough. This is when I become a major nag, the 103 day. Every two hours I start bringing her tiny tiny saucers of food. One bite of tofu marinated with pumpkin seed oil, which her acupuncturist said she should eat. I become an amuse bouche chef. Little plates with little garnishes and tiny smears of sauces. I thought cooking would be my main thing, the main way I could help her. I was literally trained to do this, my culinary school’s curriculum was called Food and Healing. I have my gomashio and brown rice at the ready, my little Japanese-style pickles, my mini miso soups, green juices, shiitake broths. “It just doesn’t appeal to me, Gu. I’m sorry. I had a bite.” I ask her what she wants to eat more than anything, what she’s craving. Nothing.

Cashew cheese is the only secret weapon I can rely on, and it’s a good one. She likes it. She actually loves it, and since we sell Treeline in the shop she has an endless supply of it. Then our bestest customer sends us a huge care package of Miyoko’s cheese (I wrote her a ridiculous me note thanking her a million times and mentioning the cancer thing and she wrote back all about her relationship with her mom and one thing about all this is that it’s a damn quick way to learn deep things about people in your life you never thought you’d learn deep things about. It’s weird. I like it.).

She nibbles on it steadily the next few days. I breathe again.

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*          *          *

After her port insertion, they went over the post-op guidelines: don’t drive any tractors, don’t make any significant decisions. Then we went to the cafeteria and she picked out some veggie straw things because she couldn’t eat all morning and didn’t want the snacks I’d brought (I seem to always bring the wrong snacks. I’m slowly learning.) and seems vaguely hungry. In the car she gave me one. I spit it out and grabbed the bag—ranch flavor. She spat hers out, too, and we laughed about the significant decision she just made to un-veganize both of us. We drank coconut water to cleanse our palates, started the drive home.

Primary Caretaker.

I, like, didn’t really think about it? What it meant, you know? Turns out, it’s sort of a full time job. I guess everyone but me knew this. Record keeping, that’s a big thing. Driving, that’s a huge thing. I don’t drive, usually. Three miles a day, maybe five if I have to run a lot of errands. Phone calls. L.O.G.I.S.T.I.C.S. Nagging. Nagging turns out to be like half my day.

At night last night I chopped vegetables for meals that won’t get eaten and fiddled around the shop, Kate and I shared a pomegranate. Maresa brought bread and we made grilled cheese sandwiches with Miyoko’s cheese and Mark brought soup from the diner because M&M are still all about buying weirdly vegan things from the diner. Jacob did Jacob things: logistics. He officially cancelled my Hawaii flight for me. Fourteen winters of Hawaii escapes, streak broken. I’ll go in the summertime maybe. We’ll all go together after chemo and after the surgery that I have to believe is going to come after the chemo, after she recovers a bit and can fly. Hawaii in the summertime is great, I’ve only seen it once. Different fruits, more flowers.

My mom told me that while she was out having the procedure, she had a dream about being in a mushroom forest with mushrooms growing all around her. I’ve just ordered a million mushroom extracts and tonics that have been shown to shrink tumors. A good omen.

*          *          *

Chemo. Got here at 8, won’t be done until 3, brought only snacks. Should have brought my special calming truffles, because in the waiting room my mom started pretty much freaking out. “When are they going to take us, this is taking forever. This is ridiculous.”

You’d be nervous, too.

Lists of what to do better next time. Slippers, a full meal, wearing a button-down shirt instead of a pullover.

Exhausted by sickness already.

Tiptoed into the hospital cafeteria and I know I live in an amazing bubble but when I ask them if the soup has dairy the woman tells me she has no idea and when I ask if I can make just a sandwich with veggies and mustard and things on bread the woman tells me she can only make the sandwiches listed on the board and a guy behind me who clearly works there says that if I have so many dietary restrictions I should bring my own food and the woman behind the counter rolls her eyes at me and agrees with him and I whip around and yell ‘YOU ARE A TERRIBLE HUMAN BEING’ and go stand in a dark corner where no one can see me for a minute–but still, we need to eat and I can’t believe I forgot the first rule of veganism, Thou Shalt Always Bring A PB&J Just In Case, so I go back and get some terrible roasted veggies from the steam table that are surrounded by and share a serving utensil with meat which I then heat up in a microwave and not to be a fucking snob or anything but I haven’t used a microwave since I worked at Simon & Schuster in 2001 and by the time I make my way back out of the disgusting basement cafeteria and into the clean, well-lit window-rich chemo floor my mother was all worried about me, considered having me paged. She picks at the roasted vegetables.

The radio on the drive both ways is torture chockablock. Torture report released today all about how horrible we are. We’re driving during Morning Edition and All Things Considered so we hear it over and over and over the waterboarding the everything.

It’s December. We do like half of our business in December. Stopping work to take a shit is tough in December, but I’m skating away, every day, to the doctor, to look at apartments, fill prescriptions, sitting on the couch making hours of phone calls while customers stream in and out. You don’t know what’s possible until it happens. I can’t be there so I am not there. It’s OK. It’s fine. It’s going OK. I miss work so much I want to cry all the time. I just want to cry all the time, anyway.

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We get back from chemo and my mom wants to come to the shop with me. I always offer to make her comfortable at home but she always says “it’s more lively at the shop.” We do Chocolate Calisthenics, my mom with her bulky cat sweater hiding the fanny pack full of fluid so toxic the papers say that if you get any on your clothing you should basically just throw it away.

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These women are crushing it this holiday season, it’s insane. Busiest day ever on the website the other day and no one even blinked, just shipped out more more more boxes. I’m doing nothing. Who even knew things were possible until they happened.

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December 12th.

I learn how to flush the port with saline I learn how to flush it with cleaning solution then I learn how to take out the needle. This will save us a trip on the second day after the chemo, when the take-home bottle of chemo is absorbed into her system. Her skin has always been sensitive, it’s red where the tape has been keeping the poison safely inside her, they should have used the sensitive skin tape, they will next time. I am scared of needles blood bodies, the word vein, all of it, but the nurse shows me how to do everything, tap on the syringe, attach it, push it, repeat, then firmly grasp the needle and remove it. I’m fine. I do it all. In two weeks, Dec 26, I can show them that I can do it by myself then I can do it at home. It’s fine. I pull the needle out and it’s fine. I realize I’m going to throw up when I hand the needle to the nurse and I calmly say “That wasn’t hard! Be right back.” and I head to the bathroom and do something I’ve never done before: burst into tears and puke at the exact same time.

Everything all at once always all the time.

I’m out in five minutes, we head to the car.

I get to work and tell Alexis her Turtles might be coming out a little bit small and she just stares at me.

“What? I mean, I don’t know, maybe I’m wrong. Maybe get a second opinion…maybe they’re fine.”

“It’s not that…are you OK?”

Maresa looks over at me and I walk into the back bathroom and she follows me and I burst into tears, blubbering about how I hate bodies and I don’t want to do the needle I’m tired of driving she won’t eat what am I going to do she’s going to die I have to help pack up that big order to ship out today I have to rent the moving truck but my brother can’t tell me when he can pick it up what am I going to do. She calms me down and ten minutes later I see Kate at the sink and I repeat the entire process, a little more hysterical this time.

And then I’m fine, the rest of the day.

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Everyone works late, even my mom. I keep offering to drive her home, but would you want to sit in a strange house with a fanny pack full of chemicals slowly dripping into you? It’s one of those special December nights when we just close up shop and put the music up louder and keep on working. One by one everyone drifts off. Brenna got to work two hours early, so she puts in a 12 hour day and takes off. Alexis finally drives my mom home, Kate is the last to stop, and then I have an hour by myself. Morrissey’s audiobook and pot peanut butter cookies. I mean what can you do, I’m trying everything.

I fucking hate the smell of weed.

It makes me want to smash everything, kill everyone. I try to make jokes about it, but privately it disgusts me. When I was a kid we had a vegetable garden to hide the pot plants. We had to weed the weed every day after school, 115°F or not. Water on all the time—did we pay our own water bills? No way we could have. My dad dealt my entire childhood, weed was everywhere, always. Seeds, scales, buds, stupid clouds of stupid smoke. It shrinks tumors, someone tells me.

She won’t take the mushroom extracts I bought her, which have been proven by studies sponsored by Sloan-Kettering, The Best Cancer Care Any Fucking Where, to shrink tumors, but she’ll eat a peanut butter cookie. Well, half of one. Nothing’s working. I need to nag her more about the mushroom extracts. Also the aminos her acupuncturist gave her. Also everything. Pumpkin seed oil green juices gentle yoga walks.

She’s read six novels and two graphic novels since she got here 10 days ago. What she wants to do is read. If I remind her ten times or more she will make a call to get the electricity in her new apartment turned on, but it takes so much nagging that it’s not worth it. Jacob and I find her an apartment, arrange the lease signing, negotiate the lease, a hundred million small details and phone calls and if you think I’m feeling sorry for myself it’s because I’m feeling

so

sorry for myself.

A while ago a friend gave me a book to give her about, you know, new agey ways to triumph over cancer like a  fucking golden butterfly emerging from a cocoon or something. I could tell even touching it made her nervous. I told her, “Would you be more comfortable if I handled all that stuff? So you could be free just to live normally?” She was so relieved.

Things really stepped up then. She sort of stopped doing—anything. When she was having the chemo the nurse explained the side effects of each medication and it was making her so nervous she couldn’t stand it. The nurse left for a minute and she told me, “when she says them, I think I’m getting them, all the side effects.” The nurse at one point tells her that she seems like the kind of patient who isn’t forthcoming with how she really feels and she agrees and then they just stare at each other and then finally the nurse says “So. You have to tell me how you really feel. I’m going to talk more to your daughter, because I can tell that this scares you and you’re checking out, OK?” And she is the kid who can go to recess, finally, opens her book and checks out of the room, you know what great readers Yearwoods are, and I take notes, make checklists, and when she shuffles off with her pole of poison to go to the bathroom the nurse looks at me and says “This is a lot for you. She has to take some responsibility at some point. OK?”

I tell her about our agreement, which has become that she will live as if she does not have cancer and that I do.

Two days later we go back and she complains about her back the entire way, her back and light dizziness, and when the nurse asks her how she is she says fine and I practically start yelling.

I can do everything, and I am doing everything, and I’m only complaining here and at work when she’s not around, which is not often because she likes sitting on the couch at work, zoning in and out, reading a hundred pages at a time, me bringing her cups of water, the mouth rinse she needs to do six times a day, cookies, minuscule meals. Physically she feels OK. A little tired because she doesn’t stretch or walk or do anything any more. Just. Sits. And. Reads. I suggest therapy I suggest sunshine walks to get green juices to stretch her legs to help the backaches. She has to hide from her mind at all times and walks aren’t good for that.

She doesn’t want to eat, she’s beginning to be a petulant teenager about it.

It’s the only thing she has control over, in this new life of hers where I set the terms, tell her when to be ready in the morning and when to pack up her stuff at night. She tells me she misses her routines. Two weeks until she can move unto her own apartment, start her own life again.

December 13. 

She tells me, “I always mean to put my dishes away, or wash them…” but and there is no but. She’s that kind of person to whom expressing the wish to have done something is to her doing something.

*          *          *

I’m so tired at night and there is so much work to do. Shana stays late to make peanut butter filling and I suddenly just say

I mean why would she do anything to help herself now

when she stayed with a man who beat her for twenty years

it’s not good to talk about at work but it’s 9 PM and Shana is so good, man. She peanut butters and I do whatever the hell I’m doing who even knows, I’m zombieing around that’s all I do this December, and we talk a little—the passivity, how horrifying it is to me.

What am I going to do. I let slip just one or two childhood stories, like the one about the bank account, and Shana says the truth: But look who you became in reaction to all of it. Yep. Look what you built. This beautiful world. It’s so beautiful in the shop tonight. Brenna baked a chocolate cake for Alexandra’s birthday party tomorrow, because Maresa’s too busy to bake shop cakes right now. Nothing smells like a chocolate cake in the oven. The windows are steamy with our industriousness.

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I work until 1 am, clean out my brain, it fixes me. One time this thing happened with Kate where her acupuncturist recommended she drink coffee to fix herself after a spinal tap sort of broke her, and it’s true, the coffee closed up holes in her spine. I’m probably explaining that wrong because I’m probably remembering it wrong, but I think about that story so much. It’s not the same obviously you can’t really compare mental v. physical like that but metaphorically what I’m telling you is that work fixes my holes most often.

I drive home and it’s clear and cold and the kids are out because it’s a Friday night and finals are almost over and I feel like an alien. Who am I even to myself. Why is this happening. When will it stop. I think about the work to be done tomorrow and it feels better.

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December 14th

The shop is abuzz with animal rights news, as it sometimes is when you employ mostly militant vegans.

My mom tells Shana and Adrienne, to their admiration and excitement, about a kapparos protest she and Judy went to recently. If you don’t know about kapparos, it involves Orthodox Jews, dontgetmestarted, swinging live chickens over their heads. I know.

“Well, it’s not exactly that we went to a protest, more like, we were the protest. We made all these signs to give to other protestors about how being Jewish should mean less cruelty to animals and stuff, but no one came but Judy and I, and Judy started yelling at the rabbi swinging the chickens over his head and it was really crazy, let me tell you.”

Meanwhile my brother is preparing to move everything they own, her two cats and their car from Chicago to New Paltz the week of Christmas.

Every night and all day my mom’s fielding calls from Harrier and Judy telling her that my brother is handling the move wrong. They think that

  • He won’t know how to pack up the apartment
  • He won’t buy enough boxes
  • The U-haul will get tickets while it’s parked in the alley and my brother is loading it
  • The cats won’t stay in their cages and will get lost
  • The cats won’t stay in their cages and will crawl into holes in the U-Haul truck
  • There will be a winter storm and….what? Cars don’t drive in winter storms, I suppose.
  • The U-Haul will break down
  • Etc.

I am constantly texting my brother, telling him that I’m staking everything on him planning this move competently. He tells me he thinks mom would be worried about anyone packing up the apartment and moving the cats by themselves. Actually it’s really only him that she’s so worried about doing these things, but I can’t convey that to him.

My brother is 33 years old. This whole time you were thinking he was like 15, right? Why no one trusts him with anything I can’t quite understand. I’m beginning to see that maybe he is completely capable but a long time ago, in order to make up for not being much of a mom when we were kids my mother decided to do everything she could for him, and would you pay bills or make food if someone was willing to do it for you?

I don’t have much of a relationship with my brother. There’s no animosity, we just don’t know each other very well. Or, at all.

I can’t go to chemo on the 24th because it’s one of our busiest days in the shop and everyone needs to leave early, so our plan is that he’ll arrive the 23rd and can drive her the 24th. I don’t want to be one of the many people who doesn’t trust him to carry out a plan, but this plan feels pretty shaky.

Jacob and I leave the shop at 2 am and he stays up until 3 AM doing shop paperwork in bed.

December 15th.

Chocolate work.

The thing about chocolate is that it wants to change. I mean we all do right. Stasis isn’t really its thing. Ganache wants to turn tempered chocolate wants to bloom, sugar–most of all sugar wants to be what it’s not. Constantly grabbing water into itself, it’s a hydroscopic water witch, dowsing divining every minute. You want it dry it wants sticky. It always wins, in time. There are tricks to prolong–humans are good at tricks. Lemon juice cream of tartar wash down the sides of the pot airtight containers silica gel packs. dehumidify always. But you can only control so much. Humans have figured out prolonging but I want cures you know. Most of my job is temperature control in one form or another. Holding a material back from what it wants to become through precision / obsession / constant observation.

Some environments you can control some you can’t.


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Next: In Which I Remove Needles From My Mother’s Body And Don’t Even Throw Up Once. 

8 Responses to “3.5 people in this room are quietly crying and i am the .5”

  1. Zoe P.

    This sounds like an amazingdifficultamazing time for you. Please continue to share and don’t feel bad about expressing frustration.

    Reply
  2. Noel Furie

    Dear Lagusta, You are a most amazing woman. What you are doing for your mother couldn’t be more difficult, more courageous or, in the end, more worth doing. I think about you often. I’m glad you have your good friends around you to help, and Jacob too. My love to you and Jacob. And my prayers (such as they are and for want of a better word) for your mother. Please tell her we are thinking of her. Much love, Noel

    Sent from my iPhone

    >

    Reply
  3. lagusta

    yeah can you even believe it!!! I don’t *have* to, but now that I can…I guess I do.

    Reply

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