What follows is my first ever blogpost, enshrined at Yahoo 360 and by invitation only. It took me nearly three months to write, not because of the craft of it, but because of the need to lie on the floor rather than face the dance of memories and bleak future.
It is poorly written. It is scattered. I can see places where I dropped my thread to go lie on the floor and never quite picked it up again. I see places I started in one direction and finished somewhere off to the right and a little behind. I see places I just didn't know what word to use and clearly picked the wrong one.
But it's my first self-medication in trying to understand my life without my mother in it. And I'm leaving it unedited.
These days, Mom mostly manifests as a sort of imaginary friend. You know how there are some stories (you think of them as "memories," complete with the negating quotation marks) from your childhood you're not sure actually happened, or happened remotely the way you think you remember them? Some days I almost call Dad or Brother to ask them to tell me I didn't just make Mom up.
Imagine how thrilled they'd be to get that call.
Some days, I go in the opposite direction. There are so many dream-like qualities to the whole thing I'm nearly convinced I dreamed it all and Mom's still here. We all have those dreams where we check our bank balance and we're somehow overdrawn and spend the early part of the waking day in a mild panic until we sort out what happened while we were sleeping and what's actually going on in the real world. Some days I almost call Mom to tell her about the weird dream I had.
Imagine how awful it'd be if I made that call.
What follows is a pretty accurate account of how I felt then. Time was warped. Everything came in as sound bites and flash images and brief shots of clarity and surreal waking nightmares and I don't know if I'll ever be able to really account for the two months when Mom was dying.
As I always do when Mom overwhelms me, I encourage you to call your mother, hug your daughter, tell someone you love how much. Not just because life if fleeting and you may not get the chance tomorrow, but also as a tribute to Mom's big heart. I'd much rather you did something loving in the name of Marin's mom than give me your sympathy today.
Caveat: you might not want to read this. It's histrionic. Its construction is shoddy. It's long. And it's perfectly OK with me if you skip this and check back in Monday.
But thanks for letting me wallow.
XOXO
M
*************
Toe in the Water
originally posted June 23, 2006
These are my parents. No matter how you slice it, your parents are two of the most important people in your life. Even if you're one of the unfortunates who would argue that, the fact that you're arguing it makes it true.
Mom and I have been known to drive each other a little crazy. My brother and father would occasionally listen to us arguing -- even fighting -- over some dumb girl thing and would be heard to sigh, "I'm so glad that's not me."
But we're shopping buddies. Gossip buddies. When one or the other of us has a particularly bad (or good) day, we call on the other to report, rehash and break it all down. I love my mom as much as a girl can.
********
October, 2005: I've been spending three or four nights a week (after work), not to mention large chunks of my weekends, carting Mom here and there. She went to Wisconsin in July for a family reunion and bent over to pick something up and felt something pop in her lower back. Ever since, she's had a hard time walking. Now she's going to accupuncture, chiropracty, the back shop at Wal-Mart... anything to fix what (she's sure) is a pinched sciatic nerve without going to a doctor.
"Either it will go away on its own, or the doctor will tell me I need surgery, and I don't want to hear it."
Nurses are notoriously bad about seeing doctors.
One night, I've driven her to Applebee's for dinner before we go shopping (if she can stay on her feet). I take a deep breath. I know I have a good point, but she's still my mom. Mom will always be a sort of authority figure, even though I'm rapidly approaching 40 years old.
"Do you really want to be hobbling around on crutches at Christmas time?" I cajole. Mom is a complete Christmas freak and I have no shame in manipulating her any way I can to get the job done. "You should go see a doctor. Besides, if you have surgery, won't they give you a handicapped placard for your car? Just think of the parking spaces we'll get for Christmas shopping!"
She laughs a little and says I have a point.
"And," I continue, sternly, "Dad and I have discussed it. If you don't go to a doctor soon, we'll drug you and carry you in if we have to when he gets home."
"You will, huh?" she says, laughing again. "OK, OK."
She calls me a few days later to say she's been to the doctor and has a CAT scan appointment in a few days. I agree to drive her to and from the appointment... and maybe go for dinner and shopping when she's done.
When Dad goes out of town, it's not unusual for Mom to call a lot, extending invitations to dinner or shopping, but it's been a little weird lately. She went so far as to call to ask if I'd look for the new Black Cherry Fresca, since she really wants to try it and can't find it near home.
I'm sensitive enough to know she wants some company but doesn't want to seem needy, so I track down some Black Cherry Fresca and stop by her house on the way to a Halloween party. Besides, I'm dressed as a dust bunny and I want someone to tell me how clever I am before I fall in with my friends.
I sit down in the recliner (Dad's, but he's in Wyoming, working) next to her and say, "So... have you been a little lonely lately?" She starts to deny it, but gives a sheepish shrug and says, "Yeah. I guess I have." I tell her, "That's OK. You don't have to send me out for Fresca -- I'd be happy to keep you company just 'cause you're a little lonely."
We chat inconsequentially for a bit, then she says, "When are you going to be done at your party?"
"I don't know. Could be 10:00, could be 4:00. Why? Do you need something?"
"Could you come by when you're done? There's something important I need to talk to you about, but I don't want it to interfere with your party."
I wrack my brain for a minute. I've never quite gotten over the idea that if my parents want to talk to me seriously, I'm in some sort of trouble.
Nope.
No trouble I can think of, so I say, "Mom, I'm going to worry all night about this. You're going to ruin my party. Can you just tell me now?"
"...you're going to ruin my party." It's a phrase I'll regret for the rest of my life, I'm sure.
"I got the results of my CAT scan back."
"And?"
"I have lymphoma."
My heart stops. My stomach goes cold. I see stars. I find myself out of Dad's recliner and on my knees in front of Mom. "Can I... Is it OK... Can I just lay my head here for a second?" I lay my head in her lap and cry for just a moment. Probably 30 seconds. All the time, my mind is racing to the right thing to say, to the right course of action.
"So what now? Did they catch it early? What's the... prognosis?" It's a word I know, but one I don't think I've ever said.
"They have to run some tests, but they caught it early. I'll have to have chemo or radiation therapy... maybe both. But it looks good."
I heave a sigh. It shudders a little at the end.
"Good. So what do we do? I'm here for whatever you need. What do you know?" I'm so close to babbling, but I'm keeping it fairly calm.
Turns out she just told my dad. She's known for almost 48 hours, but wanted him to be the first to know.
"Please don't say anything to Bill and Elizabeth. They don't know yet and I want to tell them myself." I agree, of course. I need my brother and sister-in-law right now -- I need my dad. My heart feels like it could burst. But I get that cancer, no matter how big and all-encompasing that word is, is a very personal thing.
I go to my party and I so want to talk to someone... anyone. But I feel I can't. The family needs to know first. And I loathe the Tragedy Vampires, those needy souls who ride the coattails of any crisis that falls anywhere near their paths. I don't want to be That Girl.
Elizabeth calls me the next day. "Your mom wants to come over tonight," she complains. "She wants to talk to us. I was hoping she could just call and we could do it by phone..."
I understand. Elizabeth is trying to teach college algebra and work on her master's degree in applied mathematics. Bill is on the road a lot, so he's spread a little thin with work and he's also leaving the boys (my nephews, 1 and 5) with Elizabeth. And let's be fair: Mom has a history of random social brainstorms. At one time or another, we've all been caught with something that sounds important and turns out to be whimsical Mom tangent. I know Elizabeth has little patience for my mom's random social brainstorms at the moment.
I also know she'll understand completely when Mom tells them what's on her mind.
Months later, Elizabeth and I will confess to each other how poorly we responded to Mom's simple request for an audience. It didn't feel selfish or self-centered at the time, but in hindsight, it was so grossly selfish. We forgave each other and comforted each other with our own tales of impatience.
By the way, it turns out the problem my mom thought was sciatica was actually a fractured pelvis. Her dislike of doctors and high tolerance for pain had let her hobble around on a broken pelvis for three months. A shiver goes up my spine; if we hadn't hounded her into getting the hip and back problem checked out, it may have been ages before the cancer was discovered.
(let's switch tense, shall we? Present-speak is getting wearing and feels pretentious, but I don't want to go back and change it all now.)
Late in October, I'd decided not to buy the house I'd been renting-to-own for two years and found a place to buy. I was just house-hunting and beginning the mortgage process when Mom's diagnosis came in.
It wasn't sudden, but it was quick. Dad came home and carted Mom to weeks' worth of tests. Non-Hodgkins lymphoma: a high remission rate, but she'd never be fully free of it. That's OK. We'll do the chemo and the steroids and the radiation and whatever we need. Then we'll do it again in ten years if we need to. We love each other, we support each other. There has never been a better family in my book.
Mom had her first and second chemo. Just before Christmas, she was feeling great. She admitted it was probably the course of steroids they gave her right after chemo to boost her recovery, but she was feeling great. A trip to the doctor confirmed that she wasn't just feeling good, she was making amazing progress. She'd had (I think) six tumours when she started. Two were completely gone and the others had shrunk considerably. She was happy and so proud of herself for healing so well.
************
December 23, 2006: Dad's cousin, Jody, and her mother, Faye, long time gossip buddies, invited us to join them (along with Jody's sister and her four daughters) for a big, old fashioned, girly trip to the nail salon for festive holiday pedicures. I told Mom I'd drive if she wanted to go.
We got matching Christmas manicures, with glittery stars and Christmas trees, Mom's on a vibrant purple background and mine on deep red. Dad rolled his eyes when we got home, but Mom happy means Dad happy.
Dad had been leery of the amount of activity Mom was undertaking. The holidays are always busy, but for a Christmas freak with cancer, they seemed so much more so.
I knew of Dad's trepidation, but also knew Mom was feeling good and giddy about the holiday. Besides, I'd closed on my house and it felt so weird not having Mom involved every step of the way. Usually, me buying a house would be a good excuse to shop and have many arguments over many dinners about what colours to paint the rooms, what we could shop for and other chick-centric things Mom and I enjoyed.
So I extended an invitation: "If you want, we don't even have to tell Dad. I'll come and get you. But... do you want to see my house tomorrow? We can have brunch at my favourite brunch place. It'll be a nice start to the Christmas festivities."
I find I'm almost holding my breath. I think part of me is worried she'll tell me she's tired from all the goings-on and part of me is hoping not to feel rejected if she says no.
"Oh, yeah. I'd really like that. Let's talk to your dad..."
***********
December 24, 2006: Almost surprisingly, Dad agreed. They showed up at 10:00 the next morning. Now, my townhouse is very vertical. There's no way to get anywhere without going up stairs. I opened the garage so they could pull in, minimizing the stairs to the living room level.
Mom was beaming. She was happy for me and excited. True to form, I could see her mentally decorating and earmarking truckloads of housewarming presents to make my house a home. I was so glad to have her there -- it's like my house was finally a home. Like so many times in the previous couple of months, I heaved a big sigh. She didn't feel up to going all the way to the top level where the bedrooms were.
"It's only bedrooms up there. They'll still be there when you heal up and are ready to see them," I said.
We had Christmas eve, as always, at Mom's and Dad's. Mom could never wait 'til Christmas morning, so we've always opened presents on Christmas Eve over pizza, saving Christmas day for stockings and a big, homecooked meal.
*********
December 25, 2006
Elizabeth, Bill and I cooked Christmas dinner so Mom could rest. She was happy, but tired. By the time my brother and his family took off, I could see she was ready for a nap. I stuck around for an hour or so, leaving around 7:00.
The next morning, Dad called.
About 8:00 Christmas night, Mom started having... well, almost like convulsions. She was in enormous pain -- so much so, he couldn't do anything for her but call an ambulance. My brave, stubborn mother with the incredible tolerance for pain was delirious, out of her head with pain.
She lapsed into a coma that night. I learned so much about medical science over the next few days: nobody seemed to know exactly what was wrong, but they all had theories and tests. All their explanations, however, ended with, "We just don't know for sure."
She was never alone. We all took turns -- or sometimes overlapped -- sitting with her in the ICU, talking into her good ear (she was nearly deaf in her left ear for years), hoping for good signs, comparing notes on her progress.
*******
Later, that same week: One day, I think after four days or so, she came out of it. She was disoriented and Dad said she said, "Hi, Gruese! [the family nickname for me... short for "Gruesome"] with a big smile on her face, even though I wasn't there.
I was selfishly gratified that she was looking for me. Still am, to be honest. I could see her big, open smile, like I'd seen so many times walking through the front door of her house.
It turned out the chemo had weakened her immune system and she'd developed a staph infection that manifested as meningitis (one thing I learned, medically speaking, is that both "meningitis" and "staph infection" are far more general terms than I realised). It was nobody's fault, but to this day I know Dad and I both wonder if we could have saved her all that if we'd forbidden her from taxing herself so over the holidays.
We found out that she had had a stroke somewhere in the span from Christmas to coming out of the coma. It, or the meningitis, had left her deaf. Dad and I laughed about spending so much time doing the movie-of-the-week-worthy talking into her "good" ear, knowing coma patients often recall hearing things while they were ostensibly out.
It was up and down for the next week or so (I keep typing things like "...for the next month or so." Time is all screwed up for me in those hospital days). Finally, they released her to a nursing home for rehab.
She was chipper and talkative and eager to rehab. We spent lots of time writing our conversations to her and reminding her that just because she was deaf, it didn't mean her roommate was. So loud, but so gratifying to talk to her and have her talk back.
Sometimes, Dad would leave the room or I'd be there before he got there and she'd ask me things she didn't want to ask Dad.
"Was I really wild when they took me to the hospital?" she asked.
"Yeah. Dad was scared and we were all worried," I wrote back. "We're all so glad you're better."
During those private sessions, she asked a lot about Dad and how he was sleeping, eating, all that. I knew she counted on me to tell her the things she thought Dad wouldn't. I was honest, but gentle.
The nursing home time seems like months, but it was only a couple of weeks. We watched her beloved Broncos with her, brought her food she'd eat, sat with her while she slept. We hammered the doctors and nurses for information, but were thwarted at most every turn.
*******
February, 2006: Mom checked herself out of the nursing home and demanded to go back to the hospital for additional care. In one of her less lucid moments, she decided she needed to go home and fell out of her bed, fracturing her wrist. The hospital moved her to a room with three other people, all labeled as problem children for trying to escape, ripping their IVs or (I imagine) biting doctors. If I'd been there, I think I'd have bitten a doctor.
Gradually, she became less cooperative and less lucid. Over the longest three or four weeks of my life (time warp, again), the doctors gave up on her. We didn't. Dad and Bill and I had several pow-wows about the things we could do for her. Alternative medicines of all kinds were discussed and researched. Herbs were purchased. A hospital bed was rented.
We didn't believe she was dying, exactly, but with the insurance and medical options presented us, hospice seemed like the best bet. At least she could come home, which she'd wanted to do since the day she came out of her coma.
Over the next three weeks or so, all Mom's brothers and her sister came to visit. She so clearly enjoyed the company and recognised everyone, but it was hard on us. Airport pick-ups and drop-offs and out-of-town visitors can tax your resources in the best of times, but we were all strung pretty thin. It all made it worth the effort to see Mom happy, though.
We even found that she'd regained some hearing. I'd thought she did while she was still in the nursing home, but didn't have anything concrete. Then one day she started singing along with a CD playing in her room. You can't imagine the excitement we all felt.
The last sibling left and Mom deteriorated pretty quickly from there. There was a point when I was sitting with her late at night by myself and I talked to her. I told her all that was going on with me, stories about her grandsons... I told her it was OK to go if she needed to. I assured her that if she wanted to fight, I'd do everything I could, everything I could think of, to help her, but I didn't want her hanging on if it was only for my sake. I told her I'd take care of Dad and Bill and the grandsons and everybody... if she had to go.
I spent afternoons, mornings, late nights with Mom and Dad and whoever was around visiting and helping. Friends and family came and sat with her and sat with Dad and sat with each other. Meals were brought in. Love was abundant. Many a person left crying, but none of them was anything but cheerful when they were with Mom.
One day, Mom was difficult. She fought food and water and tried to tear her medical port (a sort of semi-permanent IV where her pain meds pumped on a timed, regular basis) out. She lashed out at people. She spat on me. She screamed in frustration and pain. It was the hardest day of my life by far. I didn't begrudge her spitting on me. It's a badge of honour to be there through the hard times.
It was the first time I thought Mom might not get better.
A couple of days later, I had the late shift, sitting with Mom until the overnight hospice nurse came in. When Sondra showed up at midnight, she told me Mom was close to death. Her skin was cool, her pulse and breathing iffy and her skin had taken on a greyish cast. Sondra insisted I call my brother and get him to drive out and wanted to wake my dad. I told her we'd wait for awhile and see what happened.
I sat, like so many nights, and held Mom's hand and rubbed lotion into her hands and rubbed her back. I helped Sondra change her and pumped extra pain medication into her when she seemed to be getting agitated. Finally, around 2:00 in the morning, I gave in and woke Dad. After another hour or two, he sent me to bed for awhile. I dozed fitfully, worried that Mom would worsen or die and Dad wouldn't wake me so I could get the rest he'd figure I needed.
Apparently, at 6:00 or so, Mom's colour pinked up and she started breathing better. Sondra was amazed. I almost hate to say it because it sounds so petty, but I knew Mom wasn't dying that night. I told Sondra we weren't going to wake anyone up because I knew she wasn't dying.
I came back that afternoon and Dad said we should probably address what to do if Mom really was dying. I told him I wanted to be there, and to call me, whatever the hour. I told Bill all about it and asked him what he wanted: "You did the right thing. Call me if she dies, certainly, but..." I understood. He has a wife and two young children, for one thing. And while we're very similar, he's wired a little differently emotionally. He's more likely to seek a solitary place to lick his wounds than to seek comfort. And we've had some different life experiences.
To explain: I've never forgiven myself for not being there when my dog, my childhood pet, was put to sleep. I was 200 miles away at college, and my dad would have done anything he could have to get me home, but she was in too much pain and too far gone, so they called me that afternoon to tell me. My mom is worlds ahead of my dog, so I knew that if I was so regretful of not being there for my dog in her final hours, I'd be that much more so for my mother.
February 22, 2006: The phone rang at 2:00 in the morning. I knew immediately what it is -- who wouldn't? Dad said, "I think this is it. Don't hurry. Don't get in an accident to get over here, but I think you should come."
I threw on navy sweats and a UWSP (University of Wisconsin, Stevens Point -- Mom's hometown) sweatshirt. A crazy little impulse forced me to brush my teeth so Mom's final memory wouldn't be tainted with my stale breath.
I drove fast, despite Dad's entreaty, but at 2:00 on Wednesday morning, there isn't a lot of traffic. My mind -- the same mind that keeps me up for hours rearranging furniture and rehashing conversations and worrying over little nothings -- was completely dead. I could barely force words through my consciousness.
Sondra left Dad and Mom and I to our thing. I held Mom's right hand, Dad her left. We talked little. What do you say in the presence of death? Her breathing was ragged. Sometimes, she'd stop for what seemed forever. I found a spot on her throat where her pulse was visible. Every time she'd stop breathing, I'd focus on that little flutter and hold my own breath.
As hard and horrible as it was, the next two hours passed remarkably quickly.
Sondra nudged me at one point because there was a tear running down Mom's face. I dabbed it away with the tissue I was using on my own runny eyes. I still wonder -- almost hope -- if a stray tear is a normal medical thing. I have terrible guilt feelings that Mom was crying because I was crying and I don't want to feel she went to her peace worried about me.
I was thinking love and apologies and good memories and prayers and hopes just as hard as I could, hoping that some Hollywood drama of psychic conection would kick in and Mom would be awash with my best. I was holding her hand in one of mine and hugging her crosswise with the other. My face was buried in her side. Suddenly, I felt a purely electric shudder go up both my arms and into my chest. My breath caught and I was blindly, mindlessly joyful for just a moment.
My father's voice broke through that. "I think she's free now," he said.
I don't know exactly what happened in the next few minutes. I think there was patting and hugging. Definitely tears. In a sort of fog, but clearer than crystal, I called my brother.
I sat with Mom for quite awhile, as the bureaucracy of death paraded through her room. Bill came and he and Dad and I held each other until I couldn't breathe. I swallowed a world's worth of panic when the man from the Neptune Society zipped her into a burgundy body bag and rolled her to his SUV.
I went home, showered and called my favourite cousin, Tani, who livef across the street. She's always a good person to have around, doubly so in a bad situation, immeasurably in a real crisis. She asked what she could do. I had documents for work that had to be dropped off downtown and I didn't know if I could drive.
And park.
Without smashing the first bad driver who frustrated me.
We've talked about it since, and she was as relieved to have something concrete to do as I was relieved to be able to ask for help.
I went to work that day. John, my boss, and Patrick, a colleague, were hundreds of miles away working in Utah. Maybe the western slope of Colorado. Doesn't matter. They were miles away. Mary, dear Mary, was in the office. I told her Mom had died that morning. She couldn't believe I was at work. She urged me -- pushed, even -- to take the day off. I knew then, as I know better now, that I needed to stay moving.
Even now, any time my heart and mind have too much time on their own, I cry.
Dad moved to the neighbourhood where Bill and Elizabeth and the grandsons and I all live. He's mostly retired from the kind of work that offers a paycheck, but he gets up early every morning and takes a long walk -- sometimes two hours. Then he pushes himself through the summer heat digging up his new yard and hauling rock to it and anything else to keep him occupied until he's so exhausted he has to quit or until it gets too dark to work outside. Then he showers and goes to bed. He does this just about every day.
Some nights I drag him away from work for dinner or just conversation. I know that friends and family are doing the same, which makes me happy. Keeping Dad as happy as can be managed is one of my callings.
Anyway, we've talked about it, how he digs sod and hauls rock and how I work long days and weekends and fill my social schedule to the brim. When does it go away, we wonder. We acknowledge it will be a BIG step in our healing, the day we can sit back and muse without crying, panicking or feeling lost without her.
For now, I -- the girl who knitted every sitting moment, who read five or six or seven books aweek -- haven't finished a book since Mom died. I did, however, start knitting again a week ago. I'm not as obsessive or needful of the knitting as I was this time last year, but I consider it a good sign I want to knit at all now.
I didn't cry much the first week or two after Mom died. Since those blissfully barren days, I find myself crying most days. I'll be in the produce department at Whole Foods and wish Mom was there because it would be food AND shopping in a way she'd truly have enjoyed. I hear a song on the radio. ESPN talks about the Broncos' off-season. It seems every day is a new opportunity to realise what I'm missing, what Mom is missing and how much I miss her.
And this is part of my therapy. I've cried myself sick typing this out, but I can't help feeling if I can keep going through it, I can get through it and come out the other side. One of these days, this blog will be all about new restaurants, funny friend moments, good and bad movies, my nephews... For now, I need to wallow in Mom so I don't lose her or feel guilty or miss some important part of the grieving process.
I know you'll understand.
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