A Hundred Gs, Part III

January 26, 2011 at 3:52 PM (Energy, Family, friends, Help, kids, mommy guilt, Real Life) (, , , , , , , , , )

(A Hundred Gs, Part II; A Hundred Gs, Part I)

Last week when I met with my therapist, I landed on a theme that keeps coming up for me:

GUILT.

I feel guilty that I’m putting my family and friends through the stress of having to deal with my illness. I feel guilty when my mom drops everything and comes to town to run my life for a few days when I’m having tough treatments or procedures. I feel guilty asking people to stop at the store for me because I know how busy everyone is already, without having to do my stuff, too. I feel guilty when my husband gets home from a busy day at work and then cleans up the kitchen and does two loads of laundry while writing business emails and presentations and I sit on the couch watching Hoarders. (Those people are nuts — look how normal my life is by comparison!)

I know, I know. It’s ridiculous. There’s nothing I did to bring on this disease or its side-effects; guilt is useless. My life “is what it is”, and everyone does what they need to do to live with it and help us all get through it. No one feels that I’m taking advantage of them, or being lazy so I can lie around with the cat and nap all day. Why am I so wrapped up in the guilt?

I’ll break it down a little: I feel guilty because I feel like I’m not pulling my weight. I feel guilty that my disease is making other people make changes in their lives that, if I weren’t sick, they wouldn’t have to make. I feel guilty when, for example, they shower me with Christmas cards and mad money, because “normal” people don’t have that happen to them, and why should I deserve it any more than any other stay-at-home Mom who’s working part-time and keeping a household running? (Which I’m not even really doing much anymore.)

And (here’s the really ugly part) I feel guilty that my husband and kids are going to have to deal with life after me. Not this month, hopefully not for a few more years, but they WILL have to deal with it. And I know they’re resilient, and we’ve laid good groundwork for sharing emotions and feeling strong and loving themselves and coping with bad stuff, but every time I think about “my mom/wife died of cancer” it makes me crazy. Like, life is hard enough to be a kid/tween/teen without that baggage added to your cart. (At least they’ll have something to write about for their college application essays.)

What’s the solution? I know (and hear from others repeatedly) that my guilt is wasted. No one places any of this responsibility on my shoulders. No one thinks I’m being a manipulative slug. And life is like this: just when you think you’ve got everything under control, something goes all catty-wumpus and you have to readjust. Do I just “get over it”? But I’m a mom, guilt is my JOB.

I think it has to go back to my last post: change the guilt to GRATITUDE. Gratitude that I’m still here, despite the odds. Gratitude that I have such a supportive and energetic family. Gratitude that my friends aren’t sick of hearing about Sarah’s Cancer after nearly five years. Gratitude that I still have such a good relationship with my mother that we don’t kill each other after 48 hours (and Mr. W does, too!). Gratitude that we have thoughtful neighbors with snowplows and -blowers. Gratitude that I can still put on every stitch of clothing that I own and take the dog for a walk in the freezing, snowy, beautiful woods. Gratitude that I live in Boston and have access to the most cutting-edge treatments that have been saving my life for months now. (I’m such a proponent of dump-anything-that-is-a-waste-of-energy (i.e., “Why ME????”) that this should be easy.)

Gratitude that anyone out there is still listening!

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Requested Reading List

December 7, 2010 at 10:05 AM (Help, Real Life) (, , , , )

I’m afraid I’m going to fail to fulfill a promise I made a few years ago. When my second son was born, one day the cat came to me and said (I’m paraphrasing), “Why do you keep bringing these men into the house? When will we ever have the chance to be alone together in the sunshine with all these boys around, and their hammering, running, zooming, and eating?” I told her, “Elly, one day you and I will have a girl room, with a chintz-covered chaise longue, late-afternoon sunshine, a mohair-y throw blanket, a pot of tea, and a stack of great books. We’ll spend weekends in there, dozing and reading. I promise.”

Well, the Girl Room hasn’t materialized yet, and unless they’re planning a big Christmas surprise for me, it probably won’t happen. But I can still lie around with a stack of books like it’s my job, and for this Cinderelly is truly grateful.

What I’m having trouble with is: what should I read? When I hit the bookstore, I look for interesting covers or for books I’ve heard mentioned by other people. Sometimes I hit; sometimes I miss. Whenever I go to the library, I wander around aimlessly, looking at covers and pulling out books I haven’t read by authors I already know. But I’m sure there are people (other than librarians and critics) who know exactly what is good, or a classic must-read, or not-just-chick-lit-but-good-chick-lit. Are they you?

If you had a year and wanted to make sure you read all the important stuff, including classics and contemporary literature (although maybe not so much poetry; sorry, Amy), what would you read? Tell me, tell me — there’s still time to put together an Amazon list…

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Up In the Air

December 3, 2010 at 2:19 PM (Real Life, Research, Treatment, Uncategorized) (, , , , , , , , , , , , , )

With apologies to Mr. Clooney (and if he’d like to drop by, I’d be happy to deliver them in person), this week has been the definition of “up in the air”. I’ve been to The Cancer Factory three times looking for a plan, and each visit has given a teensy glimpse of what my upcoming schedule could be, but also another question or two that need answering before any decisions can be made.

So if there’s any truth to that “chronic-stress-causes-cancer” thing, I’m fooked.

Today’s downtown journey revealed another medical truth: no matter how much iron you consume the night before, you cannot pass a failing hemoglobin test. (Although if you’re looking for an excuse to eat grilled grass-fed buffalo rib-eye and sautéed spinach with pancetta, garlic and shallots, which I HIGHLY recommend, I won’t blow your cover.)

Wednesday I met with the urologist, who aside from being a nice guy, said he could fit me into his schedule for my left stent any time, all I had to do was figure out when the Phase I gang wanted me to have it done and call his nurse to book it. But I couldn’t get an answer from the Phase I gang until my hemoglobin was re-tested; 8.9 was not the 9.0 the “sponsor” (Pfizer) needs it to be for me to start the trial.

Yesterday, despite the fact that I hadn’t called to schedule it, I got messages during my nap from: the urologist’s office, the anesthesiologist’s office, and the admissions department at New England Baptist Hospital (where the procedure would be done) all telling me that I was to arrive this morning at 10:30 for my stent insertion. So I had to scramble and check with Phase I – no, they wanted me to get a transfusion (for my pitiful hemoglobin) before I had the stent placed, and I couldn’t start the trial within two weeks of a transfusion, so “no-go” with the stent procedure for today.

TODAY, I had a re-check of the hemoglobin, in hopes that my yoga, steak and spinach had helped it rebound from chemo, but no luck. Still 8.9. SCRAMBLE again to find Mr. W (and get him to answer his phone) to pick up the boys from school this afternoon, so I can get a two-hour transfusion (starting at 3:00 PM, yaaaaaawn), so I can start the trial two weeks from Monday. Which, in case no one has noticed, is the 21st of December. I’m sure I’ll have TONS of time that week to be down here three days in a row.

What I still don’t know is when I’ll be having my stent placed, but now that I’ll have a transfusion on board, I hope they can fit me in next week. But not too early, so I don’t miss Mr. W’s company Christmas Party, the only one (pathetic!) we’re scheduled for this month. And not Wednesday, ’cause Mr. W’s in an off-site meeting all day. Guess it’ll be Thursday or Friday… maybe?

It’s still up in the air.

Clooney? On second thought, I’ll meet you in Como.

Hopefully Elisabetta will be out of town.

Photo credit here.

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Random Realizations

November 9, 2010 at 1:09 PM (Funny, Help, Real Life) (, , , , , , , , , )

With the exception of catching a cold, it’s been a fantastic week. Fun things to do, plenty of excitement and opportunities to wear high heels. And along with my trend of expanding wisdom with increasing age, I thought I’d share some of the things I’ve discovered over the past seven days. Maybe some of them will be helpful.

  1. Birthdays are awesome, especially when your kids make you cards.
  2. With chocolate inside.
  3. It is possible to survive a week without diet Coke.
  4. When staying in a chic hotel with exciting on-site nightlife, you have to expect drunken hotel guests.
  5. Who are incapable of moderating their voices in quiet hallways.
  6. At 1:25, 1:54, 2:17 and 3:20 am.
  7. While lying awake silently cursing rude hotel guests, it is possible to forget all semblance of manners or empathy or respect for human life.
  8. Children get tired-and-cranky exponentially faster when playing at other children’s houses.
  9. A good playdate can last for eighteen hours, but requires devoted host parents. (XOXO)
  10. The best possible time to run into people from your past, say, college, is when you are decked to the nines in an expensive dress, killer shoes, hip jewels, and freshly-straightened hair and out for a date with your cutie-patootie hubs at The Four Seasons.
  11. No matter where you order it, shellfish-over-pasta is just shellfish-over-pasta. Lesson learned.
  12. However, it is possible to do some very exciting things the next morning with french toast.
  13. It is possible to still have things to talk with one’s husband about for nearly a whole day, even after seventeen years.
  14. Chic young things at swanky, hip bars in boutique hotels spend too much time on their cell phones texting people who are elsewhere and not enough time enjoying their surroundings.
  15. Although they seem to enjoy their fifteen-dollar vodka-and-tonics plenty.
  16. Thirty-nine and cancer-ridden means that four cocktails over the course of an evening, even with food, will result in a hangover.
  17. Irrespective of the quantity of water consumed during the same evening.
  18. Hangovers are quickly dispatched while lying in a pouffy hotel bed watching TV and eating salt-water taffy for breakfast.
  19. Coughing at night is more annoying than drunken hotel guests outside your room.
  20. Divorce can be avoided by sending the coughing party (me) to sleep in the guest room.
  21. All drivers who are not me are complete and utter morons.
  22. Especially when I’m running late.

I hope I have enlightened you with some of my new old-woman wisdom. I’m home from chemo and off for my daily kip. If you need me, I’ll be in my office.

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Coping Skills

September 17, 2010 at 12:23 PM (Family, friends, Happy, kids, Real Life, Treatment) (, , , , , , , , , , )

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.

Photo courtesy First Descents.

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Extended Stay

August 4, 2010 at 10:21 PM (Faith, Real Life) (, , , , , , , )

A very dear (and possibly quite intoxicated) friend emailed me this afternoon with a link to Christopher Hitchens’ beautifully worded essay about his cancer diagnosis, saying it reminded him of my writing. While I am highly flattered, and definitely aspire to that level of proficiency (not to mention professional success), the essay did strike a number of chords.

Hitchens speaks of the discovery of his illness as “…a very gentle and firm deportation, taking me from the country of the well across the stark frontier that marks off the land of malady.” This international one-way trip is the most shocking transition, especially for people (henceforth known as “patients”) who were previously healthy and unencumbered by medical interventions any greater than the occasional Advil. With diagnoses like ovarian cancer, what you think at first will be just a brief visit turns out to be a longer stay, with an extendable visa that might last the rest of your life.

For the past few years, I’ve envisioned myself as I always was: a mom, wife, cook, fashion fiend, friend, sister — exercising, writing, cleaning, driving, living my life — who also happened to have cancer. This summer, however, the paradigm has shifted. Now I feel like I’m a cancer patient who also occasionally writes, walks the dog, folds laundry, and makes dinner. My treatment and attendant side effects have gotten more insistent, more interruptive. I have to have my daily meds, straight from refrigeration or a cooler, at the same time every day. Within three hours, I need to be near indoor plumbing. By mid-afternoon, I need a nap. Water tastes horrible, so I have to bring my own beverages. Comfy shoes. Short walks and a place to sit down. (I’m starting to sound like my grandmother. Who’s 103.) I can no longer be the same person I was in that other country.

A part of me longs for the early stages of my illness again, that optimistic sense of purpose and determination, the adrenaline-charged vigor of the attack. Like a Saturday morning, the future was still hazy but full of potential; the fear of the unknown can be enervating but at least it’s a plan. Hitchens is starting chemo for his esophageal cancer, and I wish him health and strength to get through the journey. I miss the innocence and blind optimism and faith in medicine that carried me through that first summer with cancer. But the wisdom and perspective of the ensuing years I wouldn’t trade for anything.

Okay, maybe a clean CT scan. Or a book deal. Hitchens? Throw me a bone, eh?

Photo credit here.

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