TERRIBLE, HORRIBLE, NO GOOD, VERY BAD YEAR
There is a great book, Alexander and the terrible, Horrible, No Good Very Bad Day, which starts:
"I went to sleep with gum in my mouth and now there's gum in my hair and when I got out of bed this morning I tripped on the skateboard and by mistake I dropped my sweater in the sink while the water was running and I could tell it was going to be a terrible, horrible, no good, very bad day...I think I'll move to Australia."
Here's my version:
I found out I had a really nasty aggressive cancer and had to have surgery and right after I started chemo liam had to go into the hospital and now he's on oxygen and all my hair fell out and then I learned I'm a mutant and need to get my boobs cut off and I'm so sick and tired I can't even take care of my kids and liam isn't getting better and has to go into the hospital for more tests and everyime I think I have everything under control something happens like this morning when I get to daycare and they tell me I have to take liam home because they think he has pinkeye and I can tell you it's been a terrible, horrible, no good, very bad year.
I hate the concept that I am unlucky or cursed or whatever. That we are pitiable because bad stuff keeps happening to us. But on the other side, I'm getting really sick of being optimistic and looking at the bright side of everything and continuously getting crushed. I need to become a grumpy pessimist so I stop getting so damn disappointed. When I was talking to Liam's nurse last night, she kindly told me "you and jim are amazing," to which I replied, "why, because we haven't jumped off a cliff yet?" ...apparently I'm shifting into "anger" phase of the whole grief process. nifty.
So it didn't go as hoped with Liam on Friday. His Echocardiogram pressure measured similar/a little worse than last time, which means he's not improving as much as they'd hoped. To look at him though, you'd never guess it-- he has gained a ton of weight (3 lbs in the last month!) and is happy and active as ever. In any event, he goes into the hospital for a heart catherization, CT scan, blood work, and a bronchioscope on July 19th (overnight and under anethesthia) to hopefully get more definitive diagnosis and treatment plan. Likely he will be put on some oral medication. And of course, still, the oxygen.
I think part of the reason I'm so grumpy is because I think I just assumed that once I was DONE with chemo I would pretty much immediately be back to 100%. Seriously. The other night I was exhausted after having 6 friends and 3 kids over. I honestly was baffled why I was so tired. How's that for the definition of chemo brain? Also, my hormones are wrecked. I keep having hot flashes in the middle of meetings and covertly looking around and thinking "do you think these guys can tell that my body feels like it's about to spontaneously combust?" (they can't, i asked)
oh, sweet pink-eyed liam is up. gotta go (when exactly am I going to prepare for that big client meeting next week in Oklahoma?) *sigh* (ithinki'llmovetoaustralia)
----
p.s. lisa raised over $10k for the avon walk this weekend. Yeah her!!! Also, please take a sec to visit and comment on hilarious abigail's blog The Cancer Grrl. She starts chemo Thurs. Those of you who thought my West Side Story song adaptation was outdated will be impressed with her Madonna lyrics.
posted by Carolyn @ Wednesday, June 21, 2006
19 comments
19 Comments:
Carolyn, you just have a lot on your plate right now with Liam not feeling good and all you've been thru with your chemo, etc. dear. Just hang in there, think we are all learning that none of us seem to have quiet, calm days anymore if that will make you feel better. Take care...AJ
Carolyn -
You are just a naturally optimistic, happy person that most of us mere mortals try to measure up to. Even super heroes have bad days. So just take a deep breath (or perhaps a "hit" off of Liam's O2 tank) and think of humorous ways to combat the situation like carrying a cooler filled with popsicles to every meeting(for moments when you feel like combusting) or wearing one of those really raunchy t-shirts with a slogan on it to work (may you could wear it under your blouse?) and only you will know its there. If you don't know about the t-shirts, just send me an e-mail and I will send you one hot off the press from LA....
Keep your chin up.
RBW Fan Club President - Pasadena
Hey Tiger,
Um, exCUSE me, but SIX guests and THREE kids? Uh, first of all, I'd run screaming and then I'd sleep for five days. I hate to tell you this but you're doing pretty f**king good.
But, on the other hand, there is something tonic about being a curmudgeon, so I don't want to deprive you of it at all.
Best of luck with Liam, and congrats on finishing chemo!
(By the way, I actually *do* want to go to Australia...!)
lor(abigail)
Just give your body some time to recover. It's been through a heckuva lot these past few months. It's that classic injury/rehab story where the person pushes their body too hard and gets frustrated at the slow recovery/setbacks.
I am sure Liam will get better over time, just like you have.
phil
Hey superstar,
How to support without somehow telling you that what you're doing is wrong?
All I know is, in good times and bad, the one thing that has been a constant for me has been getting down in the dirt and looking at whatever is really going on. And I'd have to say you are (and have been) doing that admirably.
Something like, "can't do anything about it until you identify it" or one of those pop-psych 101-isms.
The other one that has sometimes helped is "This too shall pass." Of course, when someone has said it to me, I have usually wanted to say, "Pass THIS, muthaf____!!" while grabbing my crotch. But I digress...
Anyway, I'm sorry to hear the news on Liam, and to a lesser extent, I know how you feel (with Megan's eyes/strabismus). She's been getting a little worse, and even if it doesn't affect her life in any huge way, you hate to think of your kid not having the perfect life in the perfect world forever more, you know?
I'm sure it's not any easier for your own parents, even with you in your 30's.
Still here for whatever I might be able to provide for you guys. Lots of love in the meantime.
bmc :)
Cari -
What to say to someone who is going through so much - much of which I cannot begin to understand from an emotional level...
I totally know that book - it absolutely captures what it is like to feel like life is against you. It makes you say...Yes! I've had one of those days! I just wish it didn't apply to the whole year for you so far...
It reminds me of another book - the Monster at the End of the Book. You know the one, where Grover is scared of the uncertainty and keeps trying to keep you from turning the pages? Then in the end, the monster is him - a lovable, furry monster - not a big ole scary one!
Uncertainty is awful - particularly for anyone that always likes to be in control (like us, I daresay). It is what makes false peaks that much worse for some people (us again). And folks that are optimistic have that much further to fall when they are disappointed.
But the great thing about getting back on that horse and making lemonade out of lemons (sorry - Ben got me thinking this way) is that - once things get normal, or even those moments when life hints at normal (maybe you forgot about your cancer in a few moments?) - you get the opportunity to enjoy the richness and fullness of life so much more than anyone else! People wonder why you have a dopey grin all the time and wonder what is your secret. The biggest flattery is that people want to be just like you. And in case you haven't noticed, lots of people want to be like you, Cari because you are warm, kind, loving, fun, beautiful, etc.
I am so sorry that the doctors feel the need to do tons more tests with Liam. This just adds more uncertainty and frustration to you all and I will keep the lil guy in my thoughts and prayers. I agree with you that it is a good sign that he is happy, gaining weight and moving forward with his own positive attitude - I think if it as Liam's LA (maybe this is like the yoga Om?). These things will help more than any medicine.
And I am sure that the surgery is going to take it's toll as well, so I've been thinking of it as you are 2/3 of the way there. It is a really big deal for you to be in the hospital for a few days and take 6 weeks to recover. As you are able, do your best to keep your chin up and know that your village is here behind you!
I love you and am still sending you and Liam all of my positive juju,
Karlynn
Carolyn,
The reason you have the huge village of support that you have is because of the wonderful, optimistic, and caring person that you are. I don't think anyone can really imagine being in your shoes right now, but for what it is worth I don't think I know anyone in the world who could handle all of it with such grace, dignity, humor, and optimism. The reality is that I think you have such strength of character that even some of these setbacks, and I realize they are large, can't turn someone like you into a pessimist. My thought are always with you and your family. I pray that Liam gets better soon, and it sounds like he is in the best hands he could be in. You are a WONDERFUL mother!! Keep you chin up and know I'm thinking of you.
--kara
Oh Man! Boy, just when you think the good news is here, Wham gets whammed with a frustrating dr visit. Sorry to hear it.
So, your last chemo treatment was last week, and you think you're 100% again, huh? You're crazy, girl. No one in their right mind would expect you to be 100%...except maybe you. And, I guess maybe that is the so-called chemo-brain. Don't tell your office though. :)
Hope you continue to feel better. It was great to see you & your lovely fam last week. I'm pulling for you & Liam.
Love ya,
Pam
Damn straight you've had a lousy, rotten, no-good, stinking, horrible, terrible time of it and I think it's okay be angry, too, I sure don't mind.
There's no way around it - it's not fair. Do you have a punching bag? Or one of those blow-up clowns with sand in the bottom that you knock down and it just keeps bouncing back up? It might be a good release to pound on an inanimate object that keeps coming back for more, kind of in reverse of the way this year has just kept pounding on you and you have kept bouncing back up each time.
We all know you are not an angry person by your nature- you’re the farthest thing from it, but shoot, sometimes you just have let it out, aint nothin’ wrong with that. Scream, growl, holler, punch a pillow - whatever – I’ll join in if you don’t mind company. Ready, here goes *%0@@!#$
I don’t know about yours, but my scream didn’t sound very impressive – more like a wounded llama than anything else. I guess it’s a good thing I’m the only person working in the trailer today, just me and 200 MGD of DCs accumulated wastewater between me and the Potomac River. Now that's a realization that kind of makes me want to scream all over again !?!
You, Liam, Jimbo and X are all in my thoughts and prayers every day –
Love, Teri
There are days we all need to scream. Sometimes we scream for joy, sometimes we scream out of pleasure, sometimes we scream out of fright, sometimes we scream out of anger or sometimes we scream because words fail us. A good primal scream is healthy and if it feels good, do it. You have every reason to and it is good therapy. One thing about all of this is we tend to forget that it is just as important to take care of the mental side as well as the physical.
Sorry that Liam had to go home Wednesday but if I had been there, I think the same decision would have been made. There are some things we just cannot ignore.
I hope you are having a good time on your trip. I screamed for joy (inwardly) yesterday when Liam practiced standing himself up without holding on to anything and even louder when he took 4 steps. He was so proud of himself, I wish I had a camera, the look on his face was priceless.
Take care,
Lorri
Hey,
It is me again. Have you talked to your Dr. about those hot flashes?? If estrogen is out of the question, try soy. It provided some relief for me and made my moodiness a little more tolerable.
Lorri
Hey there Cari.
1st off, huge congrats for getting past the significant milestone of your last chemo visit. That alone as to make you jump for joy. I know it's been a rough go, but you just gotta believe that the worst is over.
As for Wham, well, if he has half the strength and attitude of his parents, he'll fight through his little malady no sweat. He's a tough little dude, and this time in his life will only make him a stronger person down the road. I heard a great quote the other day and I immediately thought of you guys. "Adversity builds character." I have to believe this is true (it has been in my life) and I know that as bad as 'now' might seem, it will only make each of you, and each of us, better equipped humans.
There have been many ups and many more downs, and there will probably be more downs along the way, but don't lose faith. Don't lose your spirit, your positive attitude, and definitely don't lose your sense of humor.
You said your tired of having your optimism crushed and I can relate. But replace that blind optimism with confidence, and see where that takes you. Having confidence is more than just looking at the bright side, it's knowing that you will perservere, regardless of the bumpy road you must travel.
There's a great basketball shoe commercial on TV right now (of all things to gain inspiration from) that hits home. 'Fall down 7 times, get up 8.'
Keep getting up.
...and keep smiling, and keep laughing.
much love,
jarod
p.s. I'm sending you some more e-strength. :^)
Hi Cari,
I can certainlyunderstand feeling angry, upset, whatever, when you and your family have been and are going through these hard times. The view I try to keep in mind is to be aware of and accepting of whatever feelings arise, rather than to repress or indulge in (act out) them.
The other day, I found myself trying to repress some envy that had arisen. I was truly glad when I realized that I could just acknowledge it. It really wasn't that bad, as long as I didn't make it into a big deal about my self image (i.e. "I don't want to be the kind of person who feels envy!")
Rumi says this all well:
“The Guest House”
This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they're a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whoever comes,
because each has been sent
as a guide from beyond.
Coleman Barks (trans.), The Essential Rumi. San Francisco: HarperSan Francisco, 1995, 109.
Love you,
Unc B
Hi Carolyn - sorry to just now be catching up with your blog. What a roller coaster ride you are on! At least the chemo is over.
Our family has also at times seemed "cursed" with medical problems - we prefer the term "medically challenged" - but I'm here to tell you that the ride eventually smooths out, and there will be more good days (which you will really appreciate now!) than bad.
I have not always been the most optimistic person through our issues but you are teaching me how much can be accomplished with a great attitude! You are a true inspiration!
Thinking of you and your family!
Cindy H-R
Hey Master Juggler.
Just thinking about you, wanted you to know.
Keep saying Jim's mantra: all will be well.
love,
bmc :)
I'll move to Austrilla with you...think how much fun we would have!
You crack me up!
Lots of Love
Dana
Hey Cari,
I will try to recreate my note as I pushed the wrong button and away went my original note! Oh these new fangled gizmos......!!
I am glad you liked the monkeys eventhough one looked like a dog. I am curious as to which one that was...probably one of Carol's. Just wait until you see what we are going to start sending next!! Actually we aren't sure yet but it will be imteresting.
Glad to hear Liam is his old happy self and gaining weight. It will be so nice to get to the bottom of whatever this is and address it. Please know I keep you all in my thoguhts and prayers always.
Those hot flashes. I always found carrying around a bucket filled with ice water was a great solution. Next time one attacks, just pour the bucket over you! Instant relief. It may not be appropriate for all times but don't you wish it was that simple?
Just thinking of you and wishing you the best. My love to the guys too!
Love, Cogie
Sweetie, you are like sunshine when you write. Ford and Chase used to own this movie and I loved it. A perfect choice for this blog title. I love you! :-) Hang in there. I was going to run away to Seattle but I'll go with you to Australia instead! Hugs!
Your are Excellent. And so is your site! Keep up the good work. Bookmarked.
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