One Year
May 1, 2011, The Feather Family
Today marked the last day of the year. One year of time that has been spent on an incredible journey of self-reflection. One year since Sarah, The Carcinista, died.
In many ways, this year has been amazing. Our boys and I have learned some wonderful life skills. Not just for coping with the hard things, but for really building a good life in a new way. Many things have remained the same by design. But we have also set out to create a life that works for the three of us. A life that (I believe) Sarah would be pleased with, and proud of.
We all have come to a place of peace about where she is, and how she is still in our lives. That took time, but maybe less time for us than it could have taken. Sarah gave us all permission to come to peace, and to be able to move forward in a good way. We are embracing that as a family.
May 3, 2012 is not a sad day. At least not any more sad than any other day this week or next week or last week. We’ve come to cherish our memories of Sarah and how we were a family. We talk about Sarah at the dinner table, while driving to school, at bed time. Really, whenever it feels right. I often say to the boys how proud Sarah would be to see them with all they have accomplished. They like that. And, of course, I tell them how proud I am of them as well.
I asked the boys if they would like to have a special dinner to remember Mommy on the anniversary of her death. They both smiled, and at the exact same time blurted out, “We want ice cream for dinner!” So, we’re having ice cream. Super Mom is joining us as well. We’ll be spending some special time thinking about Sarah and talking about our wonderful memories. We’ll light some candles in her honor. And, as usual, finish the evening reading some books before the kids go to sleep.
So, if you feel like having a little time to remember our hero. Maybe you, too can eat some ice cream. Light a candle. And settle in to a good book.
Cheers,
Mr. Wonderful
Today Has Been Brought to you by the Letter ‘I’
‘I’ for “insane”. “Incredible.” “Inconceivable.” “Ican’tbelievethisishappening.”
Last Monday was completely off-the-charts crazy. Let me tell you all about it.
No, wait, it’s way too much. Lemme give you the highlights:
- Awoke at 5:15AM to make 7:00 phlebotomy appointment (say that ten times fast) at The Cancer Factory.
- Finally allowed myself to be wheeled around TCF in a chair, since I had trouble catching my breath after walking up three steps and across a lobby on Saturday night, even with 3 L/min of O2
- Didn’t think to attach nose hose to air tank on wheelchair; stayed connected (for 3+-hour tour) to portable liquid canister that I’d been breathing on since 6:15am. Usually I hook onto a wall nozzle for most of my visit. [NOTE: this is foreshadowing.]
- Navelbine not living up to expectations; i.e., breathing continues to worsen. Please go to radiology for immediate CT scan.
- “Immediate” is a relative term; arrive promptly, but sit-and-wait for two hours. Scan, then return to NP’s office for further instructions.
- A mere 45 minutes later(!), NP finds me to say that scan shows further, millimeters-larger growth of tumors in all areas. No point in continuing Navelbine infusions as they are clearly not working. Please make appointment for Thursday to come back and talk with oncologist about other potential treatments, their side effects and efficacy rates.
- Wheel downstairs, return to parking garage, check out. Turn onto Brookline Avenue to realize my port is still accessed.
- Around block, park at old building drive-up entrance, persuade door guard that Mom can live-park there for five minutes while I dash down to Radiology to have my port de-accessed (remove needle from chest port, left there for cancelled infusion).
- Find available phlebotomist, convince her I don’t need access anymore today, have needle removed. Start to climb (slowly, slowly) spiral staircase from basement to street level. Get winded, stop to rest multiple times. Reach lobby, resting elbows on knees to catch breath in chair; approached by stranger who asks if I’m okay. Tell him I’m just headed to car, and stagger out front door just to realize that my portable tank, on which I’ve been breathing for over 4 hours, is completely empty.
- Collapse in front seat as panic sets in; huffingly tell SuperMom to return to valet in other building and find wheelchair with O2 tank so I can breathe while we go back to clinic to have portable tank refilled for drive home. Total panic; feel tingly all over, nauseated.
- Ticket-gate attendant finishing long chat-up with driver in front of us (as I continue feeling more nauseated and frantic) finally gives us our turn; SuperMom, holding it together nicely while explaining what we need, gets ticket, whips around to valet and tells him to get a chair with a tank NOW (see “Shirley MacLaine, Oscar-winning speech”), while finding me a plastic bag into which I yak my blueberry yogurt (fuchsia pink; poor dude with rescue chair must have thought I was exploding or something) twice. Finally chair dude hooks hose to tank and I’m back on three liters. Mom hands off the keys and we go back up to 10th floor. Emergency passes, and I’m pleased to notice that I’ve not only managed to keep fuchsia barf off floor and out of hair but also off pristine white tee-shirt. ::Rockstar.::
- On 10th floor, Receptionist pages Respiratory Therapy to come help; Super-tech David gets me hooked up with a higher-caliber portable liquid tank and a complimentary refill that will get me home safely.
- FINALLY leave hospital around 1:30 and get my post-hospital-visit chocolate milkshake by 2:10. Nap by 2:30, feeling like I’ve been run over, backed-up-on, then re-run-over by a sizeable piece of construction equipment. .
Coping Skills
I left a whole bunch of things at home this morning as I rushed out of the house ten minutes behind schedule, and only realized my mistake(s) as I was merging onto the Mass Pike. I called home to ask Mr. Wonderful to email me the shopping list so I could stop on my way home. Being the Mr. W that he is, and since he was coming downtown anyway for a meeting, he offered to bring the other stuff to me at The Cancer Factory. Timing was tricky, as I was running back and forth between two buildings for appointments that couldn’t seem to start on time, but someone smiled on me, and he pulled in just as I was dashing back across the street for my CT scan.
Short story long, he brought me the things I had forgotten, packed in a little reusable bag from lululemon (a store at which I hope to spend a lot on exercise clothing in the future). Printed all over one side of the bag are inspirational quotes, admonishments to carpe diem, etc. One specific line caught my eye: “Life is full of setbacks. Success is determined by how you handle setbacks.”
Particularly poignant this week. Yesterday I cornered a despondent and stomping #1 Son, grouchy because his brother hadn’t wanted to play outside with the dog with him. From somewhere deep within the storage pool of mothering instinct came the line, “You can’t let your happiness depend on the actions of other people. They all have their own thoughts, their own desires, and they can do as they please. If you can’t be happy unless they do exactly as you wish, you’ll always be disappointed. Be happy with your own actions, and let that be enough.” (I have no idea where I got that from, as I can be quite susceptible to the problem at hand myself, but it sure sounded good. I should probably needlepoint it on a pillow.)
It’s been a tough week to be me. Although both kids have been in school five days, for six hours at a stretch, by Tuesday night I had come down with the week-off-the-mystery-drug-fever again, and felt like a sodden lump of sand. A “quick” four-hour trip down here on Wednesday for two types of blood draws and pee-in-a-cup showed no reason why I should have a fever. Nonetheless, by mid-afternoon I’ve been ready for bed, which did not accommodate yesterday’s pot of chicken-noodle soup (I had to do something with Monday’s leftovers) nor the 6-to-7:30 soccer-clinic-on-the-complete-opposite-side-of-town-in-a-downpour-wait-in-the-van nightmare. By 8PM I was fish food.
And as I slumped despondent on the couch with hot tea and layers of wool, watching The Blind Side with the hubs, I was put in mind of something my own mom used to mention (from her infinite pool of mothering instinct). When asked the eternal question, “What do you hope for your children in their lives?”, she never responded the expected, “I just hope that whatever they do, they’re happy;” she always said, “Life is full of times that won’t be happy. I want my kids to be able to cope.”
Which is, I think, what’s been going on here at Carcinista Central. Whatever the cancerverse throws at us, we find a way through it, and most of the time we are actually happy (although some days I just sob on the steering wheel). We lean on each other when we need support, take time away when we need to be alone, and take risks knowing that the family and friends who love us will be there to pick us up if we crash.
I’ve just met with Dr. A, and my CA-125 and CT scan have deteriorated a fair amount from ten days ago. While that’s never good news, at least the results are definitive: I’m going off the study and starting chemo when I get back from First Descents. I am glad that my week in Colorado will be drug-free, but I know I’ll still be a tired mess, push-ups and pull-ups notwithstanding. It’s a program for cancer survivors, after all, even if I am the oldest and illest one there – I’m sure they’ll understand. I’ll nap if I need to, bow out of activities if I must, but I’m going. If they have to shovel me onto the plane in a wheelbarrow, I’m going. Mom taught me that much.
Besides, six hours all by myself in first class? Each way? I wouldn’t pass that up for anything.
Hero Worship
I got to meet Kelly Corrigan today. You know, she wrote The Middle Place. (If you haven’t read it yet, do so. Quickly – I’ll wait. Well, maybe not.) She grew up in the same place I did, and we have a mutual friend, Lisa, who was plugging Kelly’s new book on FB yesterday and hooked me up with the reading today at a local library. The moment she walked into the room, I felt like I had met her before, or knew her from somewhere. (I’m sure I wasn’t alone.)
Kelly was diagnosed with breast cancer in 2004. She was 37, and her daughters were 2 and not-yet-4. (Sounds strangely familiar, right?) Anyway, I won’t spoil the story for those who haven’t read it, but I will tell you that when I read The Middle Place the first time, it certainly relieved me of the pressure of having to write my own cancer memoir. Sure, the tumors were in different parts of our bodies, we live on opposite coasts, and her tale takes a different course than mine, but aside from that she pretty much wrote down every thought that was running through my head that first summer of treatment. My knee-jerk impulse to careen home and curl up in my mom’s lap. My realization that the world was not nearly as forgiving a place as my life to that point had led me to believe. My constant search for the best words to use in mass emails to strike the balance between accuracy and upbeat optimism, so as not to get anyone down (and ensure plenty of replies). My awe at the way my husband stepped up to the plate to maintain some semblance of order over chaos. My fear of how every moment of my illness was affecting my kids.
Kelly read from The Middle Place and her new book, Lift, a small but laser-sharp review of her daughters’ little-girl years, which she wrote so they would remember more than Kelly had of her own early youth. She explores so many of the hidden joys and pains of parenthood, and made me want to write down more of my own boys’ moments, knowing my own terrible memory and feeling the need to share their trials and triumphs with them when they’re older.
Quick-witted and smart, the more Kelly spoke, the more I understood why her books and her essays are so well received. She said herself that she “walks a fine line” of not-having-really-bad-stuff-happen-to-her (no plane crashes, alcoholism, crushing poverty) but still speaking to everyone in common sentiments. Her humorous take keeps the mood light enough that you want to read more, but the love that is so evident in all of her stories, whether about her own daughters or just dear friends, carried all of us in the room right into her lap.
So of course I had to say hello, and our mutual friend had given me a name to drop. I told her how she had written the book that I was going to write, and she laughed graciously. I’m sure I gibbered on, unable to get across how truly aligned I had felt with her own reactions, making my career as a wordsmith seem a bit misguided. I only hope that I didn’t embarrass Lisa too much.
Maybe when I get to meet Jude Law some day I won’t sound like quite so much of a starstruck schoolgirl. Then again, he hasn’t read my mind. Yet.
Feelin’ Funky
I kinda spent the weekend moping. Not off-by-myself, staring-at-the-TV, gorging-on-chips moping, but quiet reading, contemplation, unusual lack of exercise. I even vacuumed.
I don’t want to say that the results of the scan have gotten me depressed, but they threw me for a little loop, more than I would have expected. I guess I’ve been feeling so fine on the Avastin that I started to get a little cocky, and as anyone can tell you, that’s a sure sign of a fall waiting to happen. It’s not as if I’d stopped worrying about it (“Just say it, wimp, ‘the cancer'”), MY cancer, but it had receded to a place where I was actually thinking about learning about a new job, going on a kayaking adventure trip and feeling strong, planning summer trips and activities and not worrying about exhaustion or side effects.
Now, it’s not as if I’m going to keel over next week. The tumors are in the one- to three-millimeter range, and won’t impact my lung function for another six months or so even if we do nothing about them. And I still have lots of options for treating them. But as I was making pizza dough on Saturday, it hit me: some clinical-trial med they put me on might have hideous side effects. This might be the best I feel for a while. And before I could stop myself I took a little march down memory lane: summer 2006, unable to climb stairs without a break; nannies; supporters delivering meals. Mom trekking up here ten out of every 20 days to help run my household. Bald, rotund, shredded.
I feel like Mike Myers on SNL when he played that little hyperactive boy Phillip tied with a leash to the jungle gym: no matter how I try to get away from the damn cancer, eat right and exercise my feet off and do yoga and live in the moment and play with my kids and take tennis lessons and plan kayaking trips and chairing committees and all of it, I’m still tied to this effing jungle gym.
At least I look better than Nicole Kidman’s duck-lips.
Drat. Mom Was Right Again! And Here’s A Cornell Study To Back Her Up.
When we used to go outside to play in the snow, Mom always told us to put a hat on. We’d ignore her (hats were NOT cool in the ’80s – hard on the feathered hair or some such) and slog around for twenty minutes, then come inside complaining that our feet were cold. “If your feet are cold, put a hat on,” she’d say. What kind of fool sense was that? If your feet are cold, clearly you need better boots. With wedge heels and faux shearling peeking over the top. Or possibly we just needed hot chocolate.
Now that I’m a cancer chick, I’ve come to realize that there may be something to this “cold feet/body = cold head” thing. Without hair, I’m FREEZING. All the time. From mid-June to mid-October, I’m okay, but the rest of the year? Cold. Layers, and lots of them. One of the layers must be wool (ok, cashmere), including the socks, or I’m shivering. I have rediscovered the magic of hats (and thank Kors they’re fashionable again!), and wear one all the time, inside and out. (Side benefit of baldness regrowth: no hat-head!)
My constant hypothermia has become a bit of an inter-gender needling trigger chez moi. Mr. Wonderful, whose metabolism usually runs at a high boil, is comfortable in the house in a t-shirt and jeans, bare feet. Occasionally he’s been known to take the dog out in the snow in said bare feet. He’s comfortable with the thermostat set at 64 (financially as well as thermally). My boys are always complaining that when I’m cold I make them put on sweaters. I, as previously noted, am only really warm in a hot shower or tucked into bed in (dead sexy) flannel PJs and a (dead sexy) fleece hat. Oh, and please set the thermostat to at LEAST 67. Preferably 69. All three boys find my shivering amusing, and think I’m making my griping up (but have come to expect that I’ll get them with my frosty fingers in the ribs at least once a day).
Today, there’s proof for the ladies. I discovered that some researchers at Cornell have released a study that proves that bald people are colder than people with hair! That’s right, four Biological and Environmental Engineering students put sensors on the heads of test subjects and put them in a cold environment for twelve minutes. They already knew that the head is a major source (60 to 80%) of heat loss (Mom was right!). The test subjects with hats showed little difference in head temperature regardless of hair length or thickness, but subjects without hats showed much higher heat loss through the head if their hair was shorter than one cm, and once their hair length reached two cm it started adding significant insulation to the skin.
I don’t think my hair is two cm long yet, but even if it were, I’d still quote this study. Rock on, my hatted bald-chick peeps.
I'm a two-and-a-half time ovarian cancer survivor who is not only determined to make it to sixty but also to look damn good while getting there. My two boys, husband, and dog are counting on me to get out of bed every day, so I might as well wear something cute and make each one COUNT. I'd love to hear from you about your odyssey - sharing makes it all easier to take. And laugh at.
The Carcinista 