Decisions, decisions….

Person deciding on which path to take on the road

Dear Patient Followers:

Thank you for all your support after my last post, which wasn’t easy to write. It was hard to abandon you for as long as I did, but I wanted you to know I have not died. I was at home on my couch on a weekend pass from the hospice. Yesterday I had to decide whether I would remain at home or return to the hospice.

While I was at home, my lovely friend, K.. loaned me her mother’s walker, which I’ve used both in and out of the house. I still need J.’s help going up or down stairs, but can now walk short distances with the walker. I’ve also scored a generous friend’s deluxe toilet riser and a little stool for the bathtub. Yeah, old people stuff.

I’m not embarrassed to tell you about these physical supports because they’re helping me get up and move around on my own. I can’t believe I can’t push myself up from the toilet, but my decline in strength over the past few weeks has been profound.

This is what happens when anemia progresses and there is not enough oxygen to feed my muscles. I am weak because my hemoglobin is likely very low. I can’t tell you how low because I have not had my blood tested in some time. Without transfusions–which unfortunately will not make me feel better at this late stage in my illness–I will continue to get weaker. Nevertheless, I did leave the house today, and not just to move from hospice to home. That felt great.

Yesterday we had to decide whether I’d return to the hospice. The hospice was kind enough to hold my bed over the weekend. So J. and I talked. It felt better to be at home with my little family, and although I know the hospice has more supports on site, we both decided I’d prefer to be with my family right now.

If my situation changes, I will seek out the hospice again, and hope that they will have a spot there. (This hospice is small, with only 14 beds.) I will accept the risk that they will not have space for me if I want to return.

How do I ever know what the right decision is and what my needs will be today vs. a week from now? I don’t. That’s what makes decisions like these hard ones. But as it stands, being at home seems right, despite knowing my health could turn anytime. At home I can wake and sleep without interruption.

I don’t miss the middle-of-the-the-night hospice checks involving flashlights shining in my eyes, or the nurses who were a bit too chatty some days, forgetting that they were to be caring for me. Lovely people with poor boundaries. It is difficult to ask a kind but overly chatty nurse to leave my room.

So home it is and we’ll see how it goes. Our palliative home-care nurse is coming this afternoon to check in. I know I’ll feel more comfortable in my own bed. And you know I’ll keep you posted if my situation changes, or J. will if I can’t. Thanks for being tremendous supports to me during this difficult time.

 

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Brace yourselves for a bad news post

Magen David within heart, Jewish hospice symbol

I’ve been a little quiet lately, or at least quieter than normal. That’s because I’ve spent the week wondering whether I was dying.

I am writing you from one of our local hospices, where I was moved on Wednesday, after three days of sleeping day and night. I spent three days sleeping on the couch, then moved to bed and slept through the night. Three days of profound fatigue and a very sore throat.

Initially I thought it was the flu but J. called the palliative home care nurse, who suggested  I’d enter the hospice. I put my name in for a bed here and by that evening, we knew that a spot would be available the next morning. So after three days of sleeping day and night, on the morning of day 4, an ambulance transported me to my new home.

I will be honest with you: moving to a place I will be in until I die has been tough. It may be the right decision but it has been scary and overwhelming to move in. I don’t know how I’ve not died from the emotional upheaval of moving to a place like this, even though the care has been exemplary. J., bless her soul, has been sleeping on a cot by my side. She has been fed generously at mealtimes, the same meals as the residents, and is welcome to be here as much as she wants. And this place starts the day out with the best iced water around, and there’s nothing I like as much as a good cold glassa iced water. These folks know what dying people need; I couldn’t be in better hands.

After a few days of lazing around in my new bed, I’m questioning whether my admission was premature. I believe I am dying, and that it will happen sooner rather than later, but my death does not seem to be as imminent as it was when I was admitted. My mornings are fatigue and naps, but by noon I’m alert and even up to a visitor or two.

Late this afternoon, we spoke with the doctor. She heard my concerns and suggested the best of both worlds, for now at least: a day pass to see how I’d function in the community. If she takes me home, J. will be responsible for caring for me, but she seems up to the task. I am not incontinent, I do not need help with self care, and, although I am weak, I can make it to the washroom and fridge on my own. J. will need to feed me and do my laundry, but she’s been doing that for some time already. If my condition declines, I’ll return to the hospice pronto.

Blogging is low priority now. J. has access to my blog, and you will know if I die. But know that the end is near and, day passes or not, I imagine I will die in this spacious room with large windows and caring staff and great food. (If only our hospitals fed us so well! Two meals with bacon so far.)

I will be writing as long as I can. If I do not respond to your comments, I trust you will understand. I am grateful for your persistence and support. You have motivated me to keep going.

A story without a fairy tale ending

Cover of Hunger by Roxane Gay

As the year nears its end, I become excited about the publication of the Top 100 book lists. One book on every list I’ve seen is Hunger: A memoir of my body by Roxane Gay. When I am a grown-up writer, I want to be Roxane Gay. (Sorry Gabrielle Zevin, you’ve been usurped for now. I still love The Storied Life of A.J. Fikry, though.) If you’re interested in reading Hunger, know that it’s not an easy book to get through. The author bares all in her writing.

I hadn’t known of her previously, but Roxane Gay is a respected author of both fiction and nonfiction. She is also morbidly obese in what she justly calls a fat-phobic society. She was gang raped at age 12, after which she gained weight to keep herself physically and sexually safe from others. Dr. Gay views herself as a victim rather than a survivor of her rape, and acknowledges she has not healed from the trauma. She suggests people stop judging the obese without knowing their story, and realize that fat [her word] people have other attributes too.

Dr. Gay, who has a Ph.D. in technical writing and is currently a professor at Purdue University, acknowledges years of self-loathing, challenged relationships, and discomfort in her own body. Her frankness about her life is both uncomfortable and enlightening. She described the profound effects of an emotionally abusive relationship in a way that still haunts me.

She speaks of the all-too-frequent judgement and the difficult situations that she experiences. Strangers censure what she places in her grocery cart and deride her as she walks down the street. Well-meaning friends patronize her by sharing their insights about food, nutrition, and weight loss. Professional colleagues cannot hide their surprise when, after corresponding on line, they first encounter her in her physical glory. Imagine realizing you’ve been provided a chair for a reading that will not comfortably support your body, and worrying the whole time that that chair could break.

This book helped me to imagine what being obese would feel like in a society where thinness equals beauty. Is anyone truly above judging people based on their outward appearances? I know I’m not.

Near the end of the book, Dr. Gay described an ankle break that resulted in a hospital stay, and her community of support’s unexpected rallying around her. Despite all her self-loathing, she realized how many people love her and would miss her if something were to happen to her. I was reminded of how moved I was by my own troops’ tremendous support of both me and J. when I was deathly ill in the ICU. I also recall how much I appreciated the teary hugs I received when I was finally sent home. I too felt that I would have been missed had I not survived.

I can’t say reading this book will be fun, but you too could scratch an insightful read off your Top 100 list. Like me, you may find that Dr. Gay’s insights stay with you. When I’m next on an airplane and the fattest person walking down the aisle takes the seat next to me, I’ll think about this book, and I’ll make as much room as I can. Do unto others and all….

A true Israeli breakfast of champions

Israeli breakfast buffet, eggs, olives, etc.

Lest I leave you with the impression that if you go to Israel, you’ll come back with a high bilirubin count, let’s talk about the food. It’s incredible, every single morsel.

Because Israel is surrounded by countries that are, at best, ambivalent about her existence, Israeli food is largely produced within its borders. In our travels we passed olive trees, date trees, banana trees, grape vines, and pomegranate trees dripping with fruit. The bananas were so tasty, J. refuses to eat another Chiquita.

(By the way, I don’t recommend eating an olive straight from the tree–it’s not a pleasant experience. Squeeze it and watch the oil ooze out, but cure your olives before you take a bite. I learned this lesson the hard way.)

Then there are the milk products, the yogurt and labneh and white cheese, which is a loose facsimile for our cream cheese but smoother and much tastier. Because so many restaurants and hotels in Israel have kosher kitchens to accommodate the religious Israeli residents and the tourists, many kitchens exclude meat from their menus. There isn’t enough space in this small country to produce a lot of meat. Rather, there is a very large sea known as the Mediterranean that is bursting with fish, and since fish can go either way–it can be eaten with milk products or with meat–the fish is aplenty.

Now imagine that all of this food finds its way into the buffets of the typical Israeli breakfast at hotels. This meal is often included in the cost of the hotel. We call it “Israeli breakfast” while Israelis call it “breakfast”. Whatever you call it, it is a perpetual exercise in self-restraint.

Imagine a variety of yogurt and cheeses, granola, dried fruits, and preserves. There’s smoked fish and tuna salad alongside a variety of breads and rolls. Add in eggs in various preparations, perhaps in spicy tomato sauce, or as an omelette to order. Of course there are sliced tomatoes, olives, and a mishmash of salads, including Israeli salad (which Israelis call “salad”). It’s finely chopped tomatoes, cucumbers, and onions. Then there’s the stuffed pastry with savoury fillings like mushrooms or cheese.

Finally, there’s breakfast dessert, usually consisting of babka, i.e., chocolate- or cinnamon-swirled heaven, and halvah. Halvah is tahini and sugar, with added flavourings like cocoa powder or pistachios or whatever you can imagine, pressed it into a block. For immediate sugar shock, shave some halvah onto your babka.

If Israelis ate breakfast like this every day, they’d all be morbidly obese. The full Israeli breakfast is purely a tourist phenomenon, not that I’m complaining.

You won’t be surprised to learn I gained 10 lbs over the course of 14 days. But you may be surprised when I tell you that J. gained 0 lbs eating as much or more than me. Then we came home, and within one week on my strict low-sodium diet, I was back to my fighting weight.

I’ll admit it feels crummy to gain 10 lbs in 14 days, but losing 10 lbs in a week more than makes up for it. Best diet ever. You’ll come back with your bilirubin level intact, but if you gain weight, it’s all on you.

 

Believing something doesn’t make it true

I don’t really believe in anniversary reactions. I’m referring to the emotional upheaval people may experience around the time of year of a previous traumatic event. If you were in a terrifying car crash in the fall, you may become more nervous about driving around that time, for example. These reactions may sometimes reflect post-traumatic stress disorder.

Whether or not I believe in anniversary reactions, I seem to be having one. I was out of sorts last week and my sleep became disrupted (tired J. can confirm that), yet I had no idea why. You’d probably expect me to figure it out because I’m a psychologist, but I didn’t.

I hadn’t made the connection with what was happening five years ago at this time. Remember my height of attention seeking when I almost died? The whole period is a blur, but September 27 stands out in my mind. On that day, I was moved from the ICU to a private hospital room. I have three distinct memories from that day.

On the wall by every hospital bed, there is a white board with the patient’s name, the patient’s nurse, the admitting physician, and the date. I recall looking at the white board in my room and being sure that the date was wrong. It was September 20th, not the 27th, I thought. When my liver was failing, my brain fared poorly too. My grip on reality was tenuous at best. I was confused and disoriented and hallucinating. No wonder I didn’t know the date.

Later that day, for the first time in weeks, I witnessed how much my body had changed over my hospital stay. (The ICU doesn’t have a lot of mirrors, for obvious reasons.) My legs and arms were spindly from weight loss, and my skin was yellow with jaundice. I was unrecognizable. In that moment, I realized how sick I’d been.

My anxiety peaked that night. In one day, I went from having a nurse assigned solely to my care, her desk positioned so she could see me at all times, to a secluded hospital room with only occasional monitoring. I was sure I would die in this room and no one would realize it for hours. I was a wee bit anxious.

I hadn’t been aware I was thinking about that period of time, but while I wasn’t sleeping one night, I made the connection. My anniversary reaction snuck up on me unexpectedly. I may have to reconsider my belief in the whole phenomenon.

Five years ago, as I regained awareness, I was hit by how close I’d come to death. Did I ever address how scary that realization must have been? I can’t recall. And even if I did deal with it at the time, sometimes such intense emotions resurface when you least expect them. Or maybe I should reconsider this whole anniversary thing and accept my reaction as predictable.

I feel a bit better already. Last night I even slept. Today’s anniversary is truly celebratory: on October 2, 2012, I was finally discharged from the hospital to recuperate at home. Had you seen me then, you wouldn’t have thought I’d still be alive today, but here I am. I can only thank God for that.

Person in hospital bed, staff saying,

My day of awe

Yoga class with overweight woman doing warrior II in forefront

I was in a yoga class the other day, holding my Warrior II pose, when I made the mistake of turning my head to look in the mirror ahead of me. Yes, the front wall of the yoga classroom at the gym is all mirrors.  I like being confronted with the shape of my body on a regular basis, but sometimes the honest feedback is a little much.

Over the years, as my spleen has expanded, I have stopped looking at myself from the side. I can look at my body straight on, but from the side all I notice is how disproportionately large my belly is relative to the rest of my body. When I glanced in the mirror the other day, I was confronted with a painful realization: despite my recent marked weight loss, my spleen has not gone down in size. Turns out my internal organs haven’t shrunk with the rest of me. I may no longer store much junk in my trunk, but I still look kinda pregnant.

Then I came to my senses. My recently transformed body is perfect for me. I have not an ounce left to lose, and still I am critical of myself. I should know better. I’m a psychologist, for God’s sake. I help people accept themselves as they are, and, hypocrite that I am, all I can see is my own room for improvement. Some role model.

Are women ever 100% satisfied with their bodies? Is it any surprise that they’re not? I recently met a young woman who used to skate professionally. Sk8tr grl spoke of the constant pressure on her and her fellow skaters to lose weight. One of her coaches actually insisted on weigh ins every two weeks. One day, as an act of protest, sk8tr grl stepped on the scale holding her bagged McDonald’s lunch. Eventually the skaters’ protests resulted in the end of the weigh ins, but in the meantime, many of sk8tr grl’s friends developed eating disorders, one even suffering a heart attack in her mid-twenties. Sk8tr grl was strong enough to resist these pressures, thank goodness.

After my recent lapse in body acceptance, I knew exactly how to whip myself back into shape, so to speak. I headed to Eddie Bauer. If you are ever questioning your body, especially if you should not be, I suggest a visit with Eddie. Eddie and I have never met, but I believe he must have a distorted body image because his sizing is so absurd. I can count on his clothes’ fitting me in a smaller size than I’d wear in any other clothing line. Might this be a marketing ploy? “You’re a size 10? I think a size 8 would more than suffice,” says the Eddie salesperson.

Eddie or not, here I come. I will stop hiding my body under layer upon layer of oversized clothing. (The worst habits die the hardest.) I will embrace my spleen in all its ginormous glory. I will look directly in the mirror at yoga, even during Warrior II, without wincing in shame. I will love my body as it is. Anyone want to join me?

A reminder that things happen in their own time

Vacations are good reminders of how lucky J. and I are. We have the means and the flexibility and the health, especially the health, to travel. Pack a few clothes and my pharmaceuticals, find someone to care for Jelly, and we’re out the door in no time.

As my 5th cancerversary celebration, this trip has special meaning. That J. surprised me isn’t saying much; I’m so oblivious that J. could plan anything without my knowing. My ignorance doesn’t make me any less grateful for her efforts, however. Her summer is absurdly busy–she married 9 couples last weekend alone–yet she managed to squeeze in a few days off somehow.

And so we find ourselves hanging out in another city, walking our socks off (such a strange expression, since shoes hold our socks in place), and enjoying being somewhere different. It wouldn’t really matter where we went or what we did; I’d be happy we acknowledged the milestone.

Packing for this trip was a breeze, at least to start. Sunscreen? Check. Walking shoes? Check. Personal pharmacy? Check. But what to wear? I am temporarily wardrobe challenged, although you may resent my complaining about my shrinking from Large to Medium. I’m not complaining; I’m simply telling you I need a few clothes that fit.

Cancer killed my love of shopping long ago. I never want to overspend because whatever I buy today may not fit tomorrow. Still, I anticipated shopping success on this trip, so I left space in the suitcase for my purchases, and packed only three shirts for three days. I failed to factor in the possibility of a heat wave and the discomfort of a sweaty t-shirt. I also failed to consider that my search might fail.

Chopped chef with sweaty bald head preparing his dishTwo days passed, two hot and humid days, and my shirt inventory was almost depleted. Last night, after returning to our hotel, making dinner over a hot stove, the sweat dripping off me (I felt like a contestant on Chopped), I had two choices: I could shower or faint from heat stroke. I chose the former.

After the shower, I couldn’t put on the same wet t-shirt without causing a scene. J. suggested I wear my last shirt last night and then again today. Either that or try out the emperor’s new clothes, which would have caused an even bigger scene. Wearing the same shirt two hot days in a row would have to do.

After my shower, I went to get my last t-shirt from my suitcase, only to discover that I was smarter than I thought: I had brought a fourth shirt just in case, but I forgot I’d packed it. (Now do you understand how easy it would be for J. to pull off a surprise?) Of course the fourth t-shirt was my #grateful shirt. Do you even have to ask? And, yes, I was grateful to find it.

In time, I will outfit myself with a few new shirts that fit. I was reminded that not everything happens on my schedule. Until then, I will make do with voluminous shirts.

“Why no mention of pants?” you ask. For a long time now, I’ve known better than to throw out my skinny jeans. Life is full of surprises.

Introducing Dr. Blood Lite

This one’s for you, Janet.

You may wonder who this Dr. Blood Lite is, and how I named him without consulting you first, my dear readers. This time I didn’t need your help, thanks to a comment on a previous doctor-naming post. In that comment, a beloved beer connoisseur, who would never imbibe the beer of the masses, came up with this perfect name.

If you haven’t yet put one and one together, Dr. Blood Lite is Dr. Blood’s locum for her sabbatical. He is a lovely young doctor and, since he’s been trained by Dr. Blood, I know he’s learned from the best. Dr. Blood had told us she had considered her replacement carefully, and she hit the jackpot. Dr. B.L. seems calm and kind and he even introduced himself using his first name. You know how I like to be on a first-name basis with my physicians. It gives me a false sense of collegiality.

Although I did not recognize the newbie, we had met once before when I was an inpatient on the hospital’s palliative unit. Do you recall that hospital stay, the one where the hematology unit was full so I ended up lodging with the dying people? I could not remember him but J. clearly recalled Dr. B.L.’s Edmonton Oilers lanyard. In fact, I envision her hijacking my future appointments to talk about McJesus. That Dr. B.L. could remember our brief encounter is a miracle on par with McJesus’s MVP performance last year.

Back to my health for a moment. Dr. B.L. told me that, if my blood work is to be believed, I am holding steady on all fronts. This is good news. There are no significant changes since last visit, which means I will stay on my current treatment plan.

My blood work did not explain my appetite loss, which was a relief. I had pretended I wasn’t worried about my disinterest in food, but I was lying, as you probably suspected. I may have a perfectly reasonable medication-related explanation for the pounds melting off me, but as a graduate of the School of Something Could Always Be Seriously Wrong, I’ve still wondered whether my liver might be tanking. As of today, I worry no more. My liver is a-okay.

Despite my apparent well-being, Dr. B.L. was alarmed by my rapid weight loss. So alarmed, in fact, that he said something that no doctor has ever said to me before: he told me to start eating more. He forbid me from losing any more weight and said he expects me to pack on a few pounds by the next time I see him. He even suggested ways I might increase my caloric intake.

My inside voice could not help but giggle in response to Dr. B.L.’s concern. I wanted to say, “Do you realize who you are talking to? I am a glutton! Cookie Monster is my doppelganger. Or is it Miss Piggy? Whatever, you’ve got me all wrong, doc.” Instead, I listened respectfully and told the doctor I would take his concerns under advisement. Yes, I used those words. And he smiled, just a little. I think we’re going to get along.

Now I must force feed myself some dinner. Doctor’s orders.

arm reaching table full of appetizers

What goes down must come up

Once upon a time I was a dieter. I lost weight, sometimes too rapidly, for short periods of time, but most often I gained it back. I have come to believe that I cannot sustain restricted eating for any period of time. Eventually I fall far off the perpetually-hungry wagon. As soon as I start forbidding myself certain foods or food groups, I crave them all the more.

Some things I have been advised not to eat for health reasons, and I can live with those few restrictions. Grapefruit is a no-no with many of my medications. Organ meats are one of the worst things a gout-prone person can eat. Although chopped liver is a Jewish staple I consumed frequently in my youth, I’m surviving fine without the delicacy as an adult. I may be on a low-sodium diet, but I still eat the odd sodium-laden restaurant meal and I enjoy the occasional potato chip from J.’s stash.

Cookie Monster in Oscar the Grouch's garbage can saying Right now, I’m losing weight rapidly, but I can assure you I’m not dieting. Six weeks ago now, my hunger switch blew a fuse. I went from eating normally, sometimes excessively, to nary a hunger pang. Normally I’m one of those people who goes from zero to ravenous in seconds. I’m perplexed I haven’t been approached to star in one of those Snickers commercials. My hungry alter ego would be a hybrid of Oscar the Grouch and Cookie Monster. Currently my hungry-grumpy self is on vacation. I eat because I know I have to, but I’m full in no time. I’m oddly fascinated by this turn of events.

When I was discussing this problem with one of my doctors, she said that there is a fine line between lack of appetite and nausea. I have been straddling that line, but remain firmly on the lack-of-appetite side. I’ve told you many times that I am not a puker.

I don’t recommend this extreme approach to weight loss and I can’t tell you how to start your appetite loss. I am not intentionally trying to lose weight; I am having trouble eating. There is a huge difference. It’s been a while since I’ve craved a particular food and felt compelled to satisfy the craving. I miss the old days when I ate with enjoyment.

This experience is not all bad, of course. I can leave the house unconcerned about missing a meal. I no longer need an emergency snack ready for consumption at all times. And I am miraculously slipping into clothes that haven’t fit for some time. Whenever I clear out my closet, J. encourages me to hold on to some smaller-sized clothes just in case. I must be going through a just-in-case phase.

I may sound too cavalier about my shrinkage, but my doctors have reassured me there is no cause for concern. So long as I’m feeling alright (which I am), and my blood work is largely unchanged (which it is), I am not worried. I expect my appetite will come back with a vengeance once I figure out how to replace the fuse. With my renewed appetite, my lost weight will miraculously reappear. In the meantime, let me enjoy a few weeks in my skinny jeans, alright?

Pride comes nowhere near the fall

Woman who has fallen off bike, bike lays on ground

If a woman stops eating in the forest, will anybody notice her pants falling off? Does it matter?

I am here to confirm what the research has been saying for years: your stair master is lying to you. Weight loss is about eating less, not exercising more. Trust me, I know. But keep exercising because it’s good for you in so many other ways.

Many moons ago, I was dating an avid cyclist. I made the mistake of trying out one of those fancy road bikes with the skinny wheels at the prohibitively expensive cycling store. Of course this bike had fancy clip-on pedals, so I sported an ill-fitting pair of those absurd looking clip-on shoes for my trial ride down the block. Needless to say, I did not make it far before I teetered over and, unable to unclip my shoes, fell to the ground. It was not pretty. No bikes were purchased that day.

Things haven’t changed all that much over the years. I no longer need the fancy bike or the clip-on shoes to fall to the ground, however. On Wednesday, for example, I took Jelly out for her morning constitutional. As we returned to the house, I failed to properly negotiate the small rise from our lawn to the driveway, a rise that has been there since the cement was poured 15 years ago. Somehow I found myself flat on my face, with skinned hands and knees and badly mangled glasses. Surprisingly, my recent weight loss did not seem to lighten my fall.

Thankfully my trusty therapy dog was at my side, as she often is when I fall, since I do most of my walking with her. She sighed, “Oh mom, not again.”

Jelly has has been PALSing around for 6 months now. She has visited retirement homes, hospice patients, university students, and a variety of special-needs populations. She has offered wags and kisses far and wide. People marvel at how calm she is in even the most chaotic of settings.*

She had an especially successful visit with a hoard of high-needs preschoolers. Somehow, in the midst of all the activity, she napped. One of the children saw Jelly sleeping, and observed, “She looks dead.” He repeated this statement several times. I was ineffective at disabusing him of this notion. I even placed his hand on Jelly’s belly so he could feel her breathing, to no avail. At least he wasn’t upset about Jelly’s apparent demise.

When she has her little PALS outfit on, Jelly is an equal-opportunity love sponge. She will take affection from anyone who will give it. I wouldn’t say she’s one of those miracle dogs who is drawn to the person who needs the comfort the most, but I may need to reconsider in light of my mishap.

After my fall, Jelly immediately rushed to my side, started kissing my face, and then waited patiently until I got up. I collected myself and arose slowly. Other than a few bruises, I’m absolutely fine. J., on the other hand, believes, for good reason, I am unsafe to venture out so I’ve been grounded.

Happy Canada Day! And be safe.

*I too marvel at how calm Jelly is in these special settings, since she’s often utterly frenetic at home. Remember the dining room table incident?