Am I The Only Cancer Patient In A Hurry?
WARNING: The following blog post contains a fair amount of selfish kvetching.
Last Friday morning, I had a CT scan scheduled for 12:00, which meant I needed to arrive for my delicious contrast (don’t forget to ask for Gastrografin in Crystal Light instead of the thick banana shake!) at 11:00. Now, as frequent readers will surely recognize, this runs into my inviolate naptime of 12:00, which allows me to get up at 2:35, get a parking place in the pickup line, and get my kids when they’re sprung at 3:00.
In the spirit of taking the bull by the horns, I left home at 9:45, which would normally get me to The Cancer Factory by 10:30 – nice and early, in hopes of pushing the whole process forward a little and getting me home for some vestige of my dear, sweet slumber. (It didn’t help that the cat was snoring peacefully under her paw and the furry nap blanket when I left.) Unfortunately, the universe had other plans.
Traffic was a nightmare. Pursuant to our drubbing of snow in the recent weeks, there is nowhere to put it, any of it. Thus people pulling off the interstate were unable to find parking places, meaning surface streets were jammed. As a result, the interstate was jammed, too. FOR EIGHTEEN MILES. So my quick little jaunt in town got me to the radiology department promptly five minutes late for my 11:00 appt. Thus I started my contrast drink at 11:15, and didn’t get my scan until 12:30.
While I sat and sat and sat and sat waiting for my scan, I couldn’t help but notice that not only did everyone else in the waiting room have a friend with them, but they were all placid and peaceful and walking slowly. I, on the other hand, was tapping my foot, looking impatiently down the hall, and checking the time repeatedly (why? So someone would notice and move me up the list? Bitch).
I was starving (and fuming about how I wouldn’t get home until 1:30) by the time I left, but as they’ve recently opened the new treatment building here at TCF, the cafeteria had moved there and it was too far to go for food; I’d have to wait until I got home.
And the people in front of me as I was leaving the building were walking too slowly. And the nice attendant who showed me how to use the new parking pay-station was helpful but clearly not going anywhere. Neither were the parking attendants who made me park FIVE floors underground, even though there were plenty of empty spaces above that. Neither were all the twits who were obviously out for a lunchtime scenic drive as I was trying to get back to the highway.
I know that most cancer patients tend to be older people, often retired, and that they have nothing to do that day but their appointments and possibly some liver ‘n’ onions at the Early Bird Special. I know that cancer patients, whatever their age, are worn-down and tired beyond comprehension. I know it’s uncommon to be a five-year cancer warrior who has to pick up her elementary school kids but sneak home for a nap first. I know that I’ve had a bit of a speed-demon issue (stop laughing) since I first learned how to drive. But seriously, I don’t have time to waste in traffic anymore! I can’t shuffle slowly into the elevator and whistle cheerfully while it hits every. floor. on. the. way. down. My life is SHORT, people, and I think I oughta get a special sticker or a dome light or something, at least a special parking place, to indicate that while I am a cancer patient, I’m also BUSY, and way too cute to be stuck in this hospital any longer.
At least I had a good excuse all lined up for the statie who never pulled me over: CT contrast creates a vigorous urge to be near your home plumbing. NOW.
****************************************************************************
Oh, the scan results? STABLE DISEASE. A little fluid around my left lung, but only 10% tumor growth since 12/15. I’ll see a thoracic surgeon in the next 10 days Thursday to see about tapping the fluid, but it appears that the drug is doing SOMETHING. I’ll take it.
A Hundred Gs, Part III
(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!
A Hundred Gs, Part II
We ate so many of these it's scary. And delicious.
On Thursday night before Christmas, while Mr. Wonderful and I were just settling down to another exciting read of The Deathly Hallows with the cherubs, the doorbell rang. Seven o’clock? On a weeknight? (Good grief, I hope it’s not carolers – usually four or five glöggs into their celebration, they force you to stand, freezing, in the doorway and smile inanely while they try to remember the words to “Good King Wenceslas”. Erm, sorry — back to the story.)
Mr. W went to open the door, and up the stairs trooped old friends, neighbors, new friends, their families and kids, totaling about ten merrymakers. After hugs and introductions all around, the Organizer, I’ll call her, and her daughter passed me a big folder full of notes and drawings, plus a beautiful, handmade card with a big wad of cash. “What’s this?” I asked.
“We know you already bought your boots, but a bunch of your readers and supporters got together and took up a collection for you, so you have some mad money to have fun with. Buy clothes, books from your reading list, take your boys out for dinner, whatever you want. Just enjoy it,” Ms. O said.
It was a big pile of money, and I was really floored. See, I’m not used to being the center of attention, and I felt very humbled by everyone’s generosity. More hugs all around, and wishes for Happy Holidays, and they were off. I felt very warm and fuzzy as we went to find out what the Dark Lord was up to that night.
It wasn’t until the next morning, during a lull in the packing for our weekend trip to Norman-Rockwell-gorgeous Vermont, that I had time to sit down and really examine the folder full of notes. Not only was there the beautiful card and generous gift from those who gave cash, but there were at least ten more notes, checks, and gift cards from other blog-readers and assorted supporters from all over my life: neighbors, friends-of-friends, college friends I haven’t seen in twenty years, Mr. W’s co-worker friends. I was rendered completely speechless. (And you can imagine how difficult that is.)
My initial reaction was, “I don’t deserve this. I’m going to donate it to Ovations.” Mr. W talked me out of it: he said, “These are people who gave to YOU to help you feel better while you’re feeling horrible. They want you to spend it for yourself, to make you happy. Use it, enjoy it. You deserve it.” I felt guilty, I felt greedy, but I could feel the love in all the notes, heartfelt kids’ drawings, and expressions of uplifting support, so I stopped.
And switched it to gratitude. I know that people who love us, people who read my blog, wish there were something they could do to help me get through this disease. So when the opportunity arises to bring casseroles, Christmas cookies, or donations to the Carcinista Couture Collection, they jump. They help. They get gifts from giving, too. That’s what the whole Christmas-present thing is all about.
Gratitude. I’m full.
With heartfelt thanks to Ms. O and her co-conspirators, The Instigator (BKJ), TLP, TEA, SHB, SM, SMH, KFS, JQP, JBB, H&GP, JPW, JWF, HM, K&RS, DS, and anyone else, in my chemo-brained stupor, I might have missed. You have no idea.
Photo credit here.
A Hundred Gs, Part I
Alright, stop harassing me, I’m back.
A couple of items before I jump in:
- I don’t know who the 100+ people per day are who have been re-reading my last post over and over for the past month, but thanks. Your dedication is astounding.
- I hate winter.
The past month has been really insane. From the fabulous boots to the non-existent nephrostomy bag to the fact that my trial drug seems to be working. Yes, you heard me, it appears to be working.
I felt like death-warmed-over the week before Christmas, and Mr. W and I were having the tough discussions about what music to play at my memorial service, how pretty his next wife was allowed to be, etc. etc. I had aches and pains, took Dilaudid to get to sleep at night, had trouble with a flight of stairs. I was pretty out of it.
Then all of a sudden, with that fabulous news about my hugely resilient kidneys (and the onset of the action of my new Celexa prescription, coincidentally), things sorta turned around. Okay, I did spend 24 hours in bed with a stomach bug, but I wasn’t huffing the inhaler all the time; I wasn’t taking narcotics to sleep, and my symptoms (full all the time, pain in the cancerous nodes in my neck, groin) seemed to fade away.
Which brings us to the news, delivered last Monday, that my CA-125, previously in the 200s, had dropped to 79. Seventy-nine. Holy crow, is there a light at the end of this tunnel? And even if there isn’t, if the CT scan scheduled for the end of the month shows not stability but merely slowed progression, so what?
That’s right, I’m feeling grateful. It’s taken a long time to get to this point, but if all I get from this clinical trial is an extra two months without symptoms, I’ll take it. It has been an opportunity to feel like myself again — well, the latest incarnation of myself, with two-hour naps and no muscle tone — and to read out loud to my kids without getting winded; to not only have the energy to make dinner but to go to the grocery store and have the presence of mind to think of a recipe to make, collect all the ingredients, then move down the aisle and see another idea pop up. (And to be grateful as well for the freezer full of lovingly prepared casseroles to thaw and bake on the nights when I’m beat.)
And to feel gratitude that my hair is too long and desperately in need of highlights, but sprouting from my very own head.
Without this two months of feeling better, I might have missed this:
The A-man and his post-bar-fight face.
Tomorrow: Part II.
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.
