it’s not just for Tiberius

This week we had a sort of bittersweet milestone. My dad is officially done with cpt-11, the horrific chemo that has held his metastatic cancer at bay all these years. He’s done because it is losing efficacy. So our celebration is mixed; he won’t be sick for a while and he will be enjoying his days more. It means the most effective medicine they had for him is no longer working.

Tonight I made him a lemon meringue pie (his favorite) and we had a family dinner. He read to my kids; we talked and laughed and Nels and Grandma did their typical battle of wills which I find delightful. My dad drank some wine and seemed happy and of course looked too skinny.

I feel too tired and sad to write much about my father and his illness. Normally I’d try to dig down deep and let you know how I feel, but I don’t want to.

Today was a big day; I was out the door by 8:30 when my mom, my aunt Patti, and her girlhood friend Nancy picked us up for breakfast. From there we were dropped off at the salon for haircuts; then walked to the Y where Nels and I watched Sophie in her swimming lessons. We walked another half mile to the Farmer’s Market; then two buses home. Long, long naps for the kids as I baked, made dinner, and blogged my latest sewing accomplishment.

And oh Jesus. I can’t stop, even though I know it’s fucked up.

on the road again… [ kegger at my parents’ place! ]

Yesterday my father, mother, and their wee little dog loaded up in their homebuilt motor home (actually a converted logging crew bus with black-purple and gold detail, solar power, and an elevated roof – it’s a trip) waved, and headed off for a 2+ week trip to Montana – the Tetons, Yellowstone, friends.

My brother gave long, sincere hugs goodbye. I felt just too rotten to do that so I pretended I didn’t feel bad and held Nels on my hip (my god… he’s three years old! I don’t really have the baby-on-hip thing going on anymore, do I?). I occupied my mind thinking of how I was going to steal their lawnmower for a few weeks and pick up some of my mom’s flower starts. But really, I felt just inexplicably shitty and couldn’t get away from it; as they drove off I thought, well it makes sense I feel bad. My whole life we’ve been a foursome; we’ve always been together. And as they left I felt a keen separation as I will when either parent succumbs, and I wonder when that will be. My mother at least is mostly convinced my father doesn’t have much hope of holding out much longer; his chemo treatment is losing efficacy and there isn’t a backup plan after it stops holding the fort. Daily I go back and forth between letting them do the thing their way and just supporting and loving them; or inserting myself more aggressively: asking them to seek more opinions, going online and looking up experimental treatments. Daily I yo-yo between being allowed to accept his death and the peace and sadness this brings, and fighting for more life. It’s an odd state of being that protracted illness and long-looming death can beget.

I also harbor this sneaking suspicion those sneaky bastards that are my Mom, Dad, and brother know something I don’t and are keeping it from me. Like that the doctor only gave him a few weeks to live and that’s why they’re having this roadtrip. I wouldn’t put it past that trifecta of non-communication. Last week he was so not-sick after his chemo I grew alarmed and point-blank accused him of not having treatment Tuesday, which he denied. Five minutes later I then ambushed my mother, coming inside the house with my kids: “Did dad really have chemo yesterday?” Her innocent and surprised reply, “Oh yes,” was clearly honest. He just lucked out and wasn’t very sick. The first time in six years we’d seen him feel good post-medicine, and I’m suspicious about it.

It’s hard sometimes to remember that it isn’t the cancer that makes him feel so bad, it’s the medicine. I can’t believe he’s even gone through it for all these years with scarce a complaint (to anyone else; I know my mom gets a more full story). Sadly thought, it’s also the sickness that contributes as he can get depressed. The depression changes him. I have known and loved him thirty years and up until he got sick I’d never seen anything like the depression, I would not have thought he had it in him. I don’t talk him out of it, I talk to him. Sometimes he barely answers. I have found if I keep talking to him eventually he pulls his head out of whatever mire he was in and answers me. I go home, then come back the next day.

I like being active; on their trip, I email them. I work on a care package to send general delivery to whatever township they name. I thank Sweet Baby Jesus in his Golden Fleece Diapers that we moved here. It has been so nice spending time together and I love, love watching my children with my family. Yesterday at breakfast my father and my son sat together and my dad helped him eat breakfast and they fit together like peas in a pod. Nels put his hands up to grandpa’s face and said in surprise, “You have glasses Grandpa!” and tenderly stroked his face. My father acted casual (his M.O. even at his most demonstrative) but his entire body leaned towards his grandson and they touched frequently. My dad wiped strawberry preserves off Nels’ face and said, “Oh, I let you get some on your shirt. Your mom’s going to be pissed.” I ignored this. Then he said, “You’re mom’s going to have a heart attack, she’s going to have kittens.” so I looked at Sophie and said, “Should we get some kittens today?”

At the table I said to each of my parents: “Ralph and I think you are a good grandpa. And we think you’re a good grandma.”

Buen viaje, mi padre y madre.

"but not a hundred of them"

My mom invited us over for dinner tonight: meatloaf. Frankly, I’m dying for a break from cooking (altho’ I won’t be eating the meat, natch). Here were the negotiations:

Me: “Are there going to be mashed potatoes?” (I love my mom’s mashed potatoes)

My mom: “OK. What about vegetables *? What does Ralph like?”

My dad: “How about carrots?”

My mom: “I know what you like. I’m trying to find out what he likes.”

Me: “He likes caesar salad – I have a great dressing recipe I can mail you.”

My mom: “Good idea! I have a head of romaine. I’ll find anchovies for the dressing.”

My dad: [ unintelligible muttering because he hates salad ]

Me: “What was that?”

My dad (sullen): “I didn’t say a fucking thing.”

* My mom’s cooking requirements per dinner: meat, one “starch”, one veggie.

more needles, more poison, more sickness, more sadness

No sooner had I finished my Mother’s Day entry the other night as Ralph was off at a concert when I got a panicked call from my mom. My father had collapsed in a faint on the floor of the bathroom. This was new. She wanted me to come over. I reminded her she could call her son that lived a few feet away, upstairs, and told her I’d be right over. I packed the kids up (they were in the bath) and went straight away.

Yesterday my dad had his typical chemo poisoning (along with an EKG ordered to investigate his fainting spell) and seemed the worse for wear. His weight is “up” as in, it’s not the lowest it’s been. But his spirits have been flagging a bit. And my conversation with my mother last night was depressing. She and my father seem miserable. They’re “doing the math” again – his CEA count is steadily climbing, this is the last treatment out there and it’s losing efficacy, etc. Doctors have asked them repeatedly not to focus on the CEA count. My mom is panicking and my father is losing heart.

It isn’t the thought of my father having limited time left in number of months or scant years, facing eradication by this disease. I have accepted this at least mentally, if sadly. But I don’t feel, as my mom does, that “the circumstances have changed” (meaning they’re on the last leg of treatment); we’ve been talking the last six years about the eventuality that cancer will claim his life, increasingly more aware of this when we found out it had become metastatic. What I’m finding troubling is my parents’ process; their drinking, my dad’s depression. My dad’s state of mind seems to fluctuate; at times he does not seem depressed as just – sick and in pain. At times it’s hard to tell why he’s morose, quiet, not speaking to us.

I can’t tell if our – meaning the children and I – frequent visits to their place are a welcome joy and distraction, or simply a loud clamoring nuisance. My children have become as familiar with grandpa and grandma and their home that they are no longer on their best manners, but rather expect enjoyment and community on every visit. My father always seems especially happy to see them. I try not to overstay.

The other day my mother, the children, and I walked past a cat who’d died mysteriously, spread out on the sidelawn of the Elks building – a massive, beautiful striped tom. Now whenever we pass that block my son says, “Kitty is dead!”, clearly not feeling any great momentous emotion about this, but rather still turning it over in his mind: What is dead? How did this happen?

I feel so sad how little I got to know two of my grandparents, while I had only limited exposure with the other two. It isn’t just that I didn’t spend time with them; even when we children did, there are so few stories that survive about the experience. We live here in HQX now, for the time being and for a handful of reasons, but in large part for both my children and parents’ experiences of one another for as long as they may have together.

get up, shower, workout, eat, nap, eat, bed

That about sums it up. Life in the village, today: my mom and I did not workout together since she needed to be at the Y at 8 (for volleyball) and my kids slept. I motivated myself by buying a new album (soundtrack for The Departed, as it turns out all Old Fart Music) and taking stuff to the gym so I could shower and get cleaned up afterwards before grabbing the kids outta kidcare. Forty-five minutes on the elliptical machine at a heart rate of about 160. I feel great.

My father and I had yet another good discussion: today, his medicine, his chemo, his choice in treatments. He is currently getting what I call a conservative / aggressive treatment – they won’t let him off the chemo very easily even with a (relatively) low CEA. He is hopeful tomorrow his PET scan will reveal the mass on his lung has not grown, then he will ask for a month off. “If I get a month off chemo, I may even take up running again,” he says, and I know he would like nothing better. I am silent, hoping the mass hasn’t grown. But he knows the drill and one thing long-term cancer survival teaches you is nothing is certain, not imminent death nor the guarantee you will survive another two months.

Another subject my dad brings up to me: his antidepressant, which my mom and he are arguing over (the doctor and my mother’s POV: take it, fool!). He says, “Let me ask you something. If someone told you that you had to take a pill the rest of your life to survive, to enjoy a quality of life, would you do it?” Excuse me, is this The Matrix? We choose once, into the unknown, and there’s no turning back? I answer, no, of course not. I would look into it. I would do a bit of research, find a doctor recommended by trusted sources, and ask a second opinion. And then yeah, I might take it. I don’t know what he’s talking about at first until he reveals this is about his Lexapro. He says in response to me, “OK, you’d seek a professional opinion. But what is your personal opinion?” I say that yeah, it seems we over-diagnose in this country. But that doesn’t mean the medicine itself may not help his situation. I go put a load of laundry in and think about it, remembering when psyche meds were offered to me and I declined. I come back into the kitchen. “Dad, you’re biased against this type of medication. If you had to smoke pot daily in order to eat and keep your weight up, you would. You are biased.” He is silent on this and I wonder what he’s thinking. The fact he brought the question to me is a good sign, at least.

Tonight we have my mother’s old boss over for dinner. He’s recently widowed and about four thousand years old and a real sweetheart. I watched him take about fifteen minutes to park (badly) in front of the house. I just completed a cold sesame noodle salad and my asparagus is roasting – my mom grills pineapple and marinated teriyaki steak. Ralph brings the kids down, scrubbed and in their best clothes, if not on their best behavior.

"sauron drips into your heart through a pinhole"

Today my father and I had a discussion about heart rate. I’ve been working out at the Y every weekday and just about killing myself on the treadmill. Example: yesterday, after running two miles, my heart rate was (if we are to believe the machine) one eighty-five. I decide to consult my dad, an experienced athlete who ran in road races for years most every weekend and won prizes most every time and beat guys half his age.

My father doesn’t run any more. Chemo and its associated nausea, fatigue, and low platelet count keep him from running. Just when he gets a break from his cpt-11 regimen and is feeling better his CEA shoots up and he has to go back on and we’re back to weight loss, illness, low-grade depression. I’m not running for him, but I know he loves to support those who run.*

So this morning my father tells me that believe it or not, the most healthy running is at that seemingly mild workout, for a longer amount of time. The trick is, you run to a target heart rate for a long distance; soon, your heart will be stronger and you will have to run faster to elevate it to the proper level. He explains, “I’d run seven miles and my heart rate would stay at 145. And I’m a lot older than you.”. I’m thinking how much I’d have to slow down to keep my rate where it needs to be (152 is the magic number – 80% of maximum recommended for a thirty-year old) and feeling like a wuss.

I follow him to the bedroom where he seeks out a device he has to monitor heart rate; a chest strap worn against the skin that transmits a signal to a wristwatch. He can’t at first get it to work; he pushes buttons in vain. He lifts his shirt and for the first time I see his colostomy bag, nestled against his ribs next to his bellybutton. The first thing I think is, Why aren’t those things manufactured opaque? and note that it’s position is lower than I’d thought. The skin on my dad’s torso is smooth and young like a boy and I remember when he used to walk around shirtless in the house or go swimming; no more. He fiddles with the strap and tells me it needs to be wet in order to work.

At the gym, I put the strap on and it’s comfortable. Running to achieve a steady heartrate is a bit awkward. I spend fifteen minutes on the elliptical machine and it’s easy to keep to about 148. The treadmill is harder – I hit on about a 3.8 mph range. A very slow jog, but an awkwardly jarring walk. I mess about with the incline and this helps me walk “slow” (3.8) but strenuous enough to get my cardio rate. For the first time ever in my life I think about my heart, my heart I am now taking care of. I’d always assumed it worked and worked well; now I’m working it out like any other muscle to help it live longer. The thought really stays with me.

And it works. All told, I spend 45 minutes and I feel great. I’m working out but I’m not hating it, or counting the minutes. I’m listening to my iPod and watching John Travolta shake his ass on the Ellen show on TV (I look about the room and see sexy, satisfied smiles on all the female faces lifted to the television). When I get off the treadmill my body moves me, not the other way around.

Another bonus: it’s 7 PM and I feel supple, energized, and body-good. I’m excited to go back tomorrow.

* This last weekend we celebrated and as a foursome participated in my father’s thirteenth “Mayors’ Cup” run, an event that he sponsors to encourage children to do a 2-mile fun run. He buys a trophy and awards the school with the most attendance at the run (percentage) with a cash donation to their library. The event was his brainchild and it grows in popularity every year.

it turns out the "C word" is actually "pie"

Every two weeks my dad receives a chemo treatment called “cpt-11” and I’ll bet my parents both bless and curse it. “Bless”, because of course, it is what keeps his CEA markers low and keeps cancer from eating another part of his body, this time more dire than his colon. “Curse” because, Jesus, in every other way it sucks. It takes time (about 5 – 6 hours of his day), it really hurts him, it makes him sick, it kills his blood platelets, and it costs (everyone) money. He often sleeps, naps, feels sick, and doesn’t eat for days afterwards – and if he’s lucky, he doesn’t get debilitating hiccups. P.S. those aren’t cute when you have them for days at a time.

After moving to HQX I told my mother I’d like to come along for the next appointment and so today she jumped at the chance. In the clinic at 10:30 my mom takes my children under her wing and shoves her copious notes into my arms (my dad has battled cancer for six years now) and my father and I end up in an exam room to wait for the oncologist. An assistant comes in and takes his vitals (weight down to 193) and asks some questions regarding health specifics, medications, then: “Are you having any problems?” “No,” he replies, laconic and (I think) rude to this young woman. I wait until she leaves and turn to him: “So your crippling bladder infection is ‘not a problem’?” “Not for her,” he says – whatever that means, but at least it means he is planning on telling his physician so I don’t have to rat out his plumbing business.

My dad and I sit for a while, silently. What hangs in the air for me is his CEA – is it going to be elevated, reduced? I read notes for a while. When I have a handle on recent events I ask questions: “So is Bactrim what you’ve been on every time you’ve had a bladder infection?” “When was your last PET scan?” We wait so long for the oncologist he starts to ask me questions, like if we’re going to take up the rental we looked at the night before.

By the time Dr. Sui arrives I believe my dad is comfortable with me being in the exam room. I instantly like the doctor; not the least of which I know my parents like him, having had his help for the last couple years. He is very sweet in demeanor, and not afraid to take minutes of quiet to look at the notes. “Sickness and fatigue?” he asks. He pronounces it “furtigue”. My dad self-diagnoses a bit and the doctor dissuades him with the tests they run; they talk about a recent bout of nausea and a lack of efficacy in his antibiotic. We discuss everything my mom wrote in the notes: the infection, a pro-active dosage of hiccup medicine, a different anti-nausea medication than the compazine he’s taken for years now. Then Sui tells us: his platelet count is good (145). But it’s time for another PET scan: if the news is bad, the possibility of weekly cpt-11. My dad is silent. I can sense his disappointment and fear. Sui explains the markers are slowly rising so we need a PET scan to look for a mass. I ask about the CEA – surely they ran one the day before when my dad gave blood? The doctor looks again and this time finds it. Ah – it is actually down a point or two. This isn’t definitive news, but it isn’t bad news either. My dad is suddenly more cheerful. The doctor moves to him and puts his hands and his instruments on his body. Seeing the tenderness of the physician’s hands makes me feel a sadness, a sweetness, for my father.

The PET scan is scheduled and we move to the room with armchairs and IVs for his chemo. In the hallway as I wait for my dad to give a urine sample (Sui was keen on this despite my father’s underrepresentation of the severity of the pain), the father of my childhood friend and college roommate comes into the hallway. He is scheduled for major surgery next week. He looks good and I know he must be “on break” from the intense radiation / chemo schedule he’s been on. I wonder if this is what being an adult child will be like; the care for and about our aging parents and our friends’ aging parents. But I am not upset thinking this. I am calm and comfortable in hospitals, around sickness and death. When sadness comes it passes through me and leaves me in peace. I am glad to be allowed time to experience it. I don’t want it to be a mystery.

Out in the waiting area my mom is directing the children; I notice everyone else is happy with them there, too. I take them to lunch and my mom joins me afterwards, having brought my father coffee as he settles into hours of taking his medicine. “Medicine”, the word we use meaning “life-saving poison”.

Later in the day mom comes home with three pounds of shiny Granny Smith apples and says, “Dad says he’d like a pie tonight. It’s something he can eat”. I’m wondering, Is he exploiting this whole sick thing? But I adore cooking requests so this evening I make a rhubarb custard because Sophie helped me pick out rhubarb today. Served warm with ice cream, it’s a hit.

feeling the same way all over again

So – let’s skip to the real story. I got my iPod this year. Bitches! I knew it. My husband could only hold off for so long (R.I.P.) . Things that make this iPod even more fun than the one that preceeded it:

* this one has a color screen
* it’s smaller (flatter), and bigger (wider, with more storage space)
* it’s cheaper (yeah, I know.)
* the packaging was teeny
* Jack Sparrow was on the package and his package is not teeny

I am in many ways a spiritual person but damn. Not when it comes to Mac gadgets. And before you think I’m shallow, please know that I don’t really give a damn what you think – also, I really do only have TWO gadgets and they are both white and chrome and Mama loves them very much.

Seconds prior to present-opening.

My mom’s home-grown hand-crafted wares.

Christmas Day dinner:

Bruschetta, Cabbage Rolls, Potato Latkes, Strawberry Spinach Salad (minus the strawberries), sparkling cider, and a Guinness Cake (not pictured: the little bastard is still contemplating his doom!)

another blessing: grandparents

This morning my parents, the dog Tuck, Nels and I walk Sophie to school. My son is sedate and measured in his walk – unlike his usual spastic running. The sun shines through the apple tree at my neighbors and my dad fetches my son an apple which he holds but won’t eat yet. After we get home I do the breakfast dishes. My mom and I are planning to do some canning (with the tongs, rack, and pot my father so sweetly bought me) so I’m getting my kitchen ready while my mom makes up a grocery list for my father. I ask my dad to take Nels to the store with him; he flat-out refuses. “He’d love to go!” I suggest. “No,” my dad flatly shakes his head. I head back into the kitchen and mutter, “They say it takes a village…” and my mom finishes, “Yeah, a village of girls.”

Soon my mom and I are in the kitchen, canning tomatoes from her garden and listening to “The Best of The Ronettes” while Nels totally fakes it as if he is perennially the Perfect Child – blissfully petting the cat up on the attic bed, putting his boots off and on, holding make-believe with his toys calmly in the corner, putting my buttons back in their glass jar after sorting them (I can only surmise he is keeping his image up for Grandma). Soon there are five pints of tomatoes on my counter and it’s time to get my daughter from school. Out to the beach where we have sandwiches and pickles and my kids run on the beach with their grandfather walking behind.

We get home to naps and some sewing on Nels’ Halloween costumes. Tonight we’ll be barbecuing dinner out at the beach with my folks, then Ralph and I get to have a date together.

chemo cap

Edited December 13, 2009: Today I started on a new knitting project and reflected on how much I love to knit – even if I only make a few items a year.  I wrote this almost five years ago and published it in my first zine, the PT Breeder.

A week ago, I took my friend Jen up on her long-standing offer to teach me to knit.  She has some misgivings on the ambition of my first project (small needles, tight stitches) but helps me in picking out my yarn and loans me her needles.  At my house, after dinner with our two families and a couple glasses of red wine, she casts on 120 stitches and watches as my fingers tremble through their first attempts at an age-old maneuver passed down for centuries.

I have decided to knit my father a chemo cap.

My family has been through this before.  “Secondary cancer” – or “distant disease”— means he has less of a chance of survival than the first time.  His first round with colon cancer a few years ago we got to see what cancer treatment looks like.  He was poisoned and irradiated and large pieces were cut out of his body.  He lost his hair, he lost weight, he had sores in his mouth and was sick all the time.  He suddenly aged.  Wheeling him out of surgery on a gurney he looked as if someone had hammered him flat.  But, we thought we had a success story.  He recovered quickly due to a healthy lifestyle as a long-distance runner and some good Polish prole genes. We thought we had one of those “what doesn’t kill you makes you stronger” family stories you hear about.  And then we find out, a day before Thanksgiving this year, that the cancer has bloomed again in his chest.  I realize this will probably be the disease that kills him, sooner or later.

I want him to live.  I want him to live to know my children.  I want him to live for my sake and his, too; but I am thinking of my children when I imagine him gone from my life.  The one grandparent I never knew is a mystery to me whereas the other three are each people I know, I have a history with.  I want him to be there for them as they enter kindergarten, play their first soccer games, graduate from high school.

I am powerless to heal him, but I want to believe I can nurture him even here, miles away.  I keep at the knitting, doggedly forcing my hands into yet another repetitious task.  As I inch along I remember suddenly how we called him “Captain Kiwi”  a few years ago in a lighthearted recognition of the fuzzy new hair growing in after they stopped treatment.  I smile to myself as I think of him; my fingers and hands gaining a body memory and the stitches flow like water from my fingers.  I sit down to knit in the quiet times of my day, a few minutes stolen on the couch, kids asleep, no sound except the hum of the heat, and the knitting needles clicking conversationally with the soft strains of the radio.  I think of the Psalm 139:  “For you created my inmost being; you knit me together in my mother’s womb.  I praise you because I am fearfully and wonderfully made”.  With each stitch I am knitting together a healed body; I am holding vigil.  The cap will be about 12,000 stitches when I am done.  12,000 stitches, more than the days I lived in his house, and with each one I am envisioning joining his cells into wholeness, combating the poison that even now is flowing through his veins.

My 2 1/2 year old daughter is up from her nap.  She climbs up to join me at the kitchen table and watches me.  “You’re knitting a hat for Grandpa?” she asks.  Yes, I say.  “Because he’s sick”, she says.  Then looks in my eyes and asks, “Is he feeling better?”  I am suddenly so sad I can’t answer her.  I don’t know if he will ever, in fact, feel much better.  All I can do is hope, and pray, and keep my hands busy.