This week was the first I’ve had alone with my second child, my babykins, 4.5 year old Little Bear, since his brother went off to nursery school three years ago and left us aimless, wondering what to do with ourselves during the day. It was only three hours back then, but what long hours, sitting on the stoop, waiting for brother to come home, trying halfheartedly to entertain ourselves until we got into the groove of pre-preschooler play again.
But this week was different. This week, when Widget went to school and LB waited for his to start, was snuggles and playdoh and friends popping by for a playdate and me pushing myself to drive to an adjacent neighborhood so that we could have a playdate with LB’s first friend that he made all. by. himself at nursery school two years ago, on HIS first day, and that we’ve had playdates with nearly every Monday since. She invited us over, and she’s not really aware of this cancer thing, and I want their friendship to continue. . . so I drove us over there, and I sat on her couch instead of mine, and we had preschooler snacks and juice and milk and it was a lovely couple of hours.
I wouldn’t have not done it for the world, for him, for them, for us. He deserves his own friends, in addition to the kids of Mama’s friends, or the younger siblings of brother’s friends, and I’m so proud of him for making and trying to keep them. So I pushed myself to drive, and to sit, and to drive home, tired. He and I came home exhausted, and we slept all afternoon. He woke four hours later and was upset that “me never go’ed to sleep!” But he had, of course. We had, and a dear friend stepped in to watch my older child so we could keep sleeping, and it was peaceful as we woke up that afternoon.
Sleep has played a big role in our lives this week, as I skipped chemo (it’s my week off), but felt the pressure of the treatment, the forced sleep, the weakness that makes getting up unimaginable, and all of that regardless on Wednesday, Thursday, and Friday. I didn’t know how to explain it, and I raged inside, angry that I couldn’t even feel great on my week off. And then I realized that it was the effects of last week’s chemo, making themselves known as they peaked 5-7 days after treatment. Right on schedule. Whoops.
So apparently the fantastic weekends I’ve been having, paired with the unexpected slowdowns on Wednesday before treatment, are right on for this chemo, although they are backwards from what you’d expect, and from what I expected, from previous treatments. I’m still getting used to this new normal, and really it has felt anything but.
Moments to remember:
On Wednesday, I was so very tired that when Little Bear brought me a stuffed elephant and asked me to play with him, I agreed, suggesting we play with the elephant in the blankets in Mama’s room. Despite not having done much yet that day, I was exhausted, and went to lie down in bed. Bear brought me stuffed animal after stuffed animal, piling them on top of me and tucking them in around me as we played. The soft lamb, the cow and his daddy, the horse and his mommy, all had adventures with us as I rested my body and talked softly with my little boy. It was a beautiful moment, and when I fell asleep, surrounded by the stuffed animals he loves, he climbed quietly down from the bed and found his Daddy downstairs.
Thursday, I fell asleep even earlier, at 11:30 after a visit from a friend and her child, and Little Bear fell asleep with me as we read a chapter from Pippi Longstocking. We slept again all afternoon, and Daddy took Little Bear to pick up brother at school without even waking me. When they returned, I was rested enough to pull out the milk and cookies, and hear all about Widget’s day at school. (It was only a “5,” but that may have been because he asked me what the average was, and that’s what I said.)
Later that night, I was in pain as I put the children to bed. I tried to keep it to myself, but as I turned on my side, I let out a quick cry as the nerves by my spine pinched. Bear crawled down from his bed, and I started to correct him for getting out when he should be staying in, but he turned around and gave me the biggest bear hug, saying, “I want to make you feel better, Mommy.”
Another time this week, as I lay in bed, waiting for the morphine to take effect to relieve the breakthrough pain, Bear and I played with toy cars. He stopped, looked up at the afternoon light, and said, “Mommy, we are so lucky.” What? I had just been silently berating myself at the lack of educational plan for the day, and how crappy a mom I was to parent horizontally again, as J used to say — and at the exact same time he was thinking he was lucky. In this case, he said, it was because we have so many toys. But I heard what he meant loud and clear, and I resolved to cut myself a little more slack for not running races with them outside, or taking them out to great adventures, or even going with my three guys to the grocery store. I’m using my energy for them. I’m reserving my energy for what’s important – for my writing, yes. For my friends, yes. But most importantly, for my children and family, and I am getting pretty good at making every minute count.
And more than anything else, they know, oh, they know, how I love them.
In light of the new Facebook game this week, I’ve been asked several times for the post I wrote decrying status updates as a form of activism, and teasing about bra color instead of real action fighting cancers of all kinds. Here’s the link. Thank you. In the name of awareness….
No surprise at all, but such sweet, sweet kids, Susan.
And I really do believe that any kids who are this deeply loved and attended to will generally always feel lucky. I watch all of my moms who I love and who are doing such a great job in a variety of circumstances and almost all of you feel like you’re not doing enough. I wish I could help you see just how infinitely more than adequate you are, but the kids tend to step in and do that anyway, so it’s not necessary. (but you are. ;))
This brought me tears, good ones, I think. I hope you have a great weekend and more time spent with the ones who matter most. xo.
Those moments … those are the ones that matter, and those are the ones that posts like this help all of us to see in our own lives. I’m glad you included the link to you wonderful “In the name of awareness” post. I remember when you originally wrote it and it is still one of the best pieces of writing, ever. (I linked to it in a blog of my own this week in regards to the latest Facebook game.)
Thank you! I can’t tell you how happy I am to hear that it’s still useful!
What a beautiful post, Susan. I can’t believe that you would for one minute be berating yourself for being a “crappy mom.” Goodness, woman don’t you know what an amazing mother you are? Your kids surely do.
You are doing such an amazing job of making every minute count. I hope you know how much you inspire me and countless others.
Beautiful words. You are a better mother than most of my friends who don’t have cancer. I’ve been in remission for 6 years and my kids were 1,2, and 6 when I was sick. I tried my best. You are doing your best. Your kids know that. I was introduced to your blog from a link on twitter. Many blessings to you and your family.
To know they are loved. That is the most important thing you can teach a child!
I wish I was half as “crappy” as you are, Susan! Tuesday starts the school year here and your post has given me the extra push that I needed to step up my game a bit in the “mom department.” Diagnosed shortly before you with IBC in 2007, my personal health challenges with this disease pale in comparison to what you have been confronted with (I had to have a large toenail removed last week due to a previous chemo side effect); however, my extra energy is not being focused where it counts most. You have been an inspiration for over 4 years, but today I have vowed to “turn my awareness into action!”
A rainy Sunday afternoon here–making every moment count is a good thought to ponder.
Your “In the Name of Awareness” post is how I “met” you, and I’ve followed ever since. I donated to a breast cancer walk that year in your honor rather than purchase anything pink or play any “game”.
Last night, I got the first info on this year’s Facebook “game”. I’ll be reposting your post to my Facebook page shortly.
You are a great mom, and a big inspiration.
I think Varda said it well, so I’ll say “ditto.” No matter how long or how short a time you have with your children, they will not look back and remember how many times you raced outside with them. They will, instead, remember the warmth and richness of the love which surrounded them every day of their lives. THAT is the greatest gift you can give them. Sharing the journey and the intimate moments is a gift you are giving all of us. I, for one, am so very grateful. Keeping you and your family in my thoughts and prayers. xo
I love you, your writing, this post…but I was stopped dead in my tracks by the line “I pushed myself to drive.”
You are so unselfish in wanting to take your son to a playdate that you are overlooking the fact that you should not be behind a wheel while on morphine and other pain killers. Please. I’m sure your friends will drive you. Call on them. I know I can never know your situation, but the truth is, if you were pulled over by police and given a drug test, you’d fail and get a DUI. Don’t put yourself, your children, and possible other innocent victims at risk.
Actually, that is NOT the truth. I had no morphine that day. I had only had my normal doctor-prescribed painkiller, and I have been encouraged to leave the house and drive myself — after all, it had been SIX WEEKS since I had done so, and I was fully cognizant of how the medicine affected me.
Thank you for caring and commenting — anyone who knows me knows I am terribly uptight about not drinking if I’m the driver — but this is not the case here. No one takes away the keys of patients who are prescribed legal painkillers.
Beautiful post. I know those minutes mean so much.
and what wonderful moments those were–you and your children and C. are so, so lucky in many wonderful ways.
You are such a great mom! We all want to feel like we are a better mommy. It’s hard but we still want to try.
Actually, morphine stays in your system 2-4 days. Google it. And you can absolutely be arrested for “legal” prescription drugs while driving. Wherever did you get information otherwise? It makes no sense. Whether a drug is illegal or prescribed, you are still impaired, no matter how sober you believe yourself to be. I know your intentions are pure and I know you’d be horrified at the idea you’d be putting yourself or anyone at risk, but you need to really think about this. Also, more food for thought: http://www.nytimes.com/2010/07/25/us/25drugged.html
Hey, I feel absolutely terrible that I sound like a psycho troll out to make trouble or that I’m giving you a hard time when that couldn’t be more farther from the truth. I’m honestly sick with worry. I know how important it is for you to try and have a normal life. But even if you are not on pain killers that day, and say your system is totally clear (but we both know that’s not true) and making that sacrifice to do without your medicine for your son’s sake. What happens if you are behind the wheel and because you are not taking your meds, you double over with pain? You really need to consider all of the consequences. And you mention oxycodone as one of your pain killers. If you take this daily and drive…not good. http://www.medicinenet.com/oxycodone/article.htm
Yes, it is fantastic you are trying to push yourself to leave the house, to live life to the fullest. But you also need to be responsible and accept the fact that you have limitations. Shrug ’em off like you always do and hug your sons. You are a wonderful mother and a brilliant inspiration, and I know you make me aspire daily to be a better person and activist. So consider this my first real activist post. I’m sorry if it hurts or upsets you…I’d be interesting in those very close to you in real life weighing in. Do you guys think Susan should be driving? And aren’t you all willing to lend her a hand with chauffeur duties? xo
Um Anonymous, I know you are trying to be helpful but I don’t think your comments are on point. I think you are simplifying what the directions are when taking painkillers and what it means for driving and other activities. The warning labels are about being aware of how meds will affect you.
When I was going through treatment for breast cancer, I explicitly asked my doctor about the appropriateness of driving while taking different sets of meds. (I live in DC, after growing up in New York, and I’m a very occasional and poor driver and don’t generally drive much – so this was very much on my mind.)
I was told that I should be aware of how the meds affected me but to use my judgement. I was told not to drive after anesthesia and to be careful when starting new meds especially pain killers. Having some of the meds in your system for multiple days doesn’t mean you are incapacitated for the whole period, and can’t do anything. I didn’t drive right after chemo – though probably could have, but did drive on the following days depending on the meds I was on and how I was doing.
I’m not trying to make light of Susan’s meds, but I trust her judgement and ability to make these decisions. (I’m guessing her doctors and family would let her know if they thought this was a problem.)
Susan – are you on any steroids? I couldn’t figure out why I had a truly terrible day 6 days after treatment and it was only after the fact that I figured out with my oncologist that it was probably in part me going through steroid withdrawal. We could have tapered the steroids to make this better.
polling Susan’s readers about whether she should drive is inappropriate. we are not a medical community, and our opinions are uninformed.
using this venue to forward your predetermined conclusion – rejecting the opinions of Susan’s doctors and her own good judgement – from behind the guise of an Anonymous cloak is not a friendly act, no matter your intentions.
expressing a “concern” that is effectively a veiled criticism of a person’s acts is a form of public shaming. Susan does not deserve that. you could have emailed her in private.
While I’m not a huge fan of the request to establish Susan’s suitability for operating a motor vehicle or parenting by general consensus of those around her, I feel it’s important to Susan that those who know her, love her and see her nearly every single day can attest (and frankly know in the bottom of their very souls) that Susan labors intensively every second of every day about doing what’s right (and safe) for her children. That would be me. I stand proudly saying it.
While oxycodone sounds incredibly dangerous to the general public, it metabolizes very quickly in the body of someone like Susan who has taken all manner of medications over the last 4 years. Her doctor (and her family AND FRIENDS) have repeatedly encouraged her to DRIVE. To remain in control of her choices and to continue to have faith in her ability to make good choices because that is one part of Susan that cancer has NOT touched.
I would put my kids in her car anytime she was willing to drive. I only hope that your (unfounded) concern hasn’t created a crisis of confidence in Susan now. No one likes their judgment to be questioned. Especially the judgment regarding the safety of her children.
Kristen (Susan’s friend, confidante, sister-from-another-mother)
I just need to shout a huge DITTO – and I don’t know you or see you or Susan day to day, but saying amen just seemed a bit religious here. 😉
Oh, honey. We do amens. Lots of them. lol
And Amen sister to your Amen! #latetothedefenseandnewlyangryatanonymous!!!
Man. Susan’s other friends are so nice. Me, not so much.
You are just being an asshole now. Your first comment was plenty. You expressed your concern while not having all of the information or facts. You stuck your nose in, but not terribly rudely, and Susan was gracious enough to answer you.
Now, you’re just being an asshole. An anonymous asshole. And you happen to be someone that we know, who doesn’t have the balls to sign your name to your “concerns” – which are actually judgments – know that I still think you are being an asshole.
Amen to canape!!!
That is so wonderful that you were able to bring your lil one to a playdate, and actually connected somewhat with the mom. At least enough to enjoy some time at her home. On her couch. And out and about. 🙂
And the rest of the post, about him wanting to make you feel better? Crashed right into my heart. My own child does that when I have a simple cold, so hearing those words – well, reading them – amazing to see how in tune the little people are, isn’t it?
I’m glad you had a few positive experiences. Your words are beautifully written and I thank you for sharing.
I don’t think I have ever met someone as aware of her body and the effects of medication and disease on it as Susan. Her mind and judgement are not clouded by pain or pain medication. For years now, she has made excellent decisions about what her body can and should not do. I have utter faith in her own assessment of her capabilities.
I will assume that your comments, Anonymous, come from a place of goodness, although posting anonymously and not choosing to take this up with Susan via email makes me wonder.
Susan, your boys ARE lucky. Horizontal though you may be sometimes, your are a brilliant, amazing mother. Don’t ever doubt that.
Anonymous, go find something else to worry about, because no one I have ever met in my life is as careful and concerned about safety as Susan. *Especially* driving safety. And I speak as her IRL carpooler.
Shame on you for posting those links. Shame on you for judging. You attempted to read between the lines and made assumptions. So I am assuming that you are a jerk. Your “xo” did not negate the cruelty.
It was very obvious when Susan said “pushed herself” she meant reaching into her energy reserves and confidence. It was obvious she was in no way impaired and as a scientist, and a careful mother, she would not drive while impaired.
However, I believe YOU are on crack to leave multiple comments like that while she shares with us the super personal moments of her journey, her illness, and all the heart-wrenching decisions she must make daily as a mother of young children while battling metastatic cancer.
It’s time for me to admit that I have a huge girl crush on you.
I am going to speak as an ED/Trauma RN AND as a cancer survivor. As a nurse, yes the medications can cloud your judgment but so can extreme pain. And it is between the physician and the patient to determine that balance. As a nurse, I hear people give medical advice all the time and just because you read an article on the internet does NOT make it true. Susan and her family and her physician will make those decisions together as a team- quite frankly my opinion or this “anonymous” opinion doesn’t matter.
Second as a person who struggled with chemo and pain and had 1,3, and 6 year old at the time, I didn’t always want to take medicine because I wanted to be present. Well when I was in pain, I wasn’t valuable either. It is a difficult thing to balance, but most importantly it is a very personal decision.
And in this case Susan decided to be vulnerable and write about her personal experience. I almost had to quit reading because it was so palpable and I was torn between wanting to fix things as a nurse and guilty for surviving. How dare anyone judge when someone speaks with such a raw, pure voice.
I refuse to judge. Life is tough. It is tough enough without cancer. But when cancer strikes, you do your best. And it is our jobs as friends, neighbors, and internet readers to offer our encouragement and grace. We could all stand to offer more grace to ourselves and others.
And on that note, Susan you have my full support, prayers, grace, and internet hugs from a stranger. You are a champion, a survivor, and a blessed mother. Blessings.
what Jenny said. amen.
another Amen! Much Hugs Susan. A and I had a great time at the party!!!
Susan, your kids are sooo sweet! You are so loved and even more importantly, your kids will always know how much you love them!
Thanks for the compliments!