I like to think of myself as having superpowers. My favorite superpower is the ability to make things go away by not believing they are true. I’ve had a lot of practice using this superpower; I was diagnosed with stage 3 breast cancer while I was still breastfeeding my baby.
That was practice using this superpower, but no success.
One of the first things that hits you over the head with a cancer diagnosis, after confronting your mortality, is the understanding that you are not in control. Control is an illusion. This is a very difficult concept around which to wrap your brain.
We’re constantly bombarded with messages about how we are in control. Make a plan and execute it. Just do it. We are the product of our own choices. Metaphors abound: in the drivers seat, steer the ship, drive to success, master of your domain (giggle, snort – if you got this Seinfeld reference, you’re old like me).
There is a lot of truth in these ideas. We are the product of our own choices – to an extent. But there is so much we can not control. The child with neuroblastoma did nothing to deserve that disease. They did not earn it. Neither did I.
For all this time we spend juggling – super-moms with all their balls in the air at the same time – we also live with this fear that one dropped ball will bring them all down. If we miss a ball, a deadline, a dental appointment, 50,000-mile maintenance check, the world will keep on spinning whether we pick up the peices and run to rejoin the party, or throw our hands up in the air in defeat.
Some of the balls are going to drop.
I worried so much after my diagnosis: How am I going to effectively parent my child, keep up the house, finish my degree, and battle this disease? I realized that I could not keep all those balls in the air. I made a choice. I decided that parenting and health were my priorities, housekeeping would get attention as I had any to spare, and I took a leave of absence from school. A year later my daughter is happy and healthy as she enters her twos, I’m nearly done with treatment though still battling fatigue, my hair is starting to grow back, and in January I returned to school full time. But, my house is still a mess.
I’m still making choices about my priorities. My house still isn’t winning.
Martha Stewart has a large staff of well paid employees that help her pull off all that magic. I don’t have to be Martha Stewart, and most of us have no hope of having a large, well paid staff to make us look good. What you see is what you get. It’s just me, Baby. Lovable. Imperfect. Flawed. With mutant genes running amok.
I am letting go of the illusion of control
I don’t want to give you the impression that I’ve got this fatalist attitude where there’s not much sense in trying because there is no hope of success. I don’t believe that at all. I try. I work my butt off. I pour blood, sweat, and tears into motherhood, and everything else I do. But I’m learning to distinguish between the things I can control, and the things I can’t.
I can control whether I provide a quiet time and space for my daughter to take a nap
I can not control whether she goes to sleep
I can control the amount and quality of the food that I eat, and I can control the amount and quality of my exercize.
I can not control my weight
I can control my own reactions to my toddler’s behavior, and I can control whether she has been fed, and provided ample opportunity to play and rest.
I can not control whether she has a meltdown in public
I can provide sufficient towels and a bath mat
I can not control whether my husband soaks the bathroom floor when he gets out of the shower
I can fight like hell, do everything prescribed, and more
I can not control whether this cancer comes back
Life got so much easier when I stopped trying to unbelieve what I didn’t want to be true. I can’t control whether or not I have cancer, I can only control my reaction to that fact. A huge burden lifted when I stopped trying to control things over which I had no control. I can’t control everything. I don’t need to control everything. The fact that I don’t control everything doesn’t make me less of a person, less of a woman, less of a mother. It makes me human. It makes me vulnerable. It makes me brave and scared at the same time. It makes me real. And it makes me more empathetic to everyone else around me.
Sometimes, the best things in life are unplanned. Usually, the worst things in life are unplanned. Either way, survival, thriving, requires the ability to adapt. In order to incorporate this new reality into my life, I’ve got to accept it. The more time I spend thinking it just can’t be true, trying to control the uncontrollable, the longer it takes to find a way to make the best of the situation.
I used to work for a cruise/tour company that was smaller, and a bit more intimate than most. This gave us the flexibility to chase rabbit trails, and make impromptu itinerary changes to take advantage of opportunities as mother nature provided. The director used to say “we have an itinerary so we have something from which to deviate.” That’s a little closer to the way I live my life these days. I make plans and set goals, I work towards them, but I try to stay flexible enough to change as necessary. That helps with crisis management; it also makes it possible to savor rainbows, and jump on opportunities as they arise as well.
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This week, the girls at SITS are discussing perfection and the art of letting go. Join the conversation (Linky included). We’re also using #SITSLettingGo on Twitter.
I get so tired of New Age Gurus and other “Experts” telling me I have to focus on the present. My memories are a great source of joy; they also contain the lessons I’ve learned that make me who I am today. The future is my goal, it’s why I endure today.
Because, let’s face it: sometimes NOW sucks. Sometimes it’s downright unbearable.
If I focused only on the present, I wouldn’t endure the hives that come with exercise. If now was all that mattered, I’d eat chocolate all day. I wouldn’t be taking classes required for graduation in subjects that don’t interest me. I wouldn’t have the goal of graduating. I’d never take the potential hangover into consideration when opening, or finishing, a bottle of wine. I’d spend my rent money on airfare to Hawaii, or France, or Greece.
If I lived only for the moment, I wouldn’t have gone through chemotherapy.
If I lived my life in the now, I likely wouldn’t have a family. My marriage started with the idea of the two of us spending the rest of our lives together. You have to look ahead to make those kinds of dreams. I would also be repeating the same mistakes over and over, because learning from those mistakes requires looking back.
I realize that there may be a time at the end of life when now is all I have. I’ll take that when I get there. Until then, I will continue to enjoy my memories, and reach for my goals.
I’m not opposed to embracing the moment. I’ve written about how my daughter gave me the gift of now. It’s important to live in the present, but it has it’s time and place. We need a balance. Each moment of our lives must be informed by our past, and driven by our dreams and goals for the future. Otherwise we’re just stagnant hedonists, and that’s just pathetic.
Today is the one year anniversary of my cancer diagnosis. This is actually a big day for me. It’s the anniversary of the day my life was turned inside out, and it has put me on a wild emotional roller coaster ride. Thinking about this cancerversary has eaten up all my energy and focus lately – right in the middle of midterms for my school and due dates for my other writing projects, as well as finals for daddy’s school, and his preparation for teaching classes next quarter, and all the other urgencies and emergencies we tackle day after day. Here we are less than two weeks away from your second birthday, and I’m just now getting around to writing this letter for your 23rd month. I haven’t even started planning your birthday party.
Don’t go thinking you are being neglected. You are by far the best part of my day – the one I will drop everything for, no matter what.
But it’s important to know that there are times when life is like this. There are times when everything seems to be coming at you from all different directions, right while you’re dealing with an emotionally heavy load, and you just can’t seem to get anything done. Forget everything, it’s hard to accomplish even one thing. It’s hard to focus; when you react to one urgency, 3 more show up right away from other arenas. You bounce from crisis to crisis, putting out fires without ever touching those all important items on your to do list…
Yup, everybody has days like that. It’s part of the human condition.
That is the most important thing to know about this situation. That when you are overwhelmed like this, you are not alone. Everyone else has been there, they know what it feels like. The details may differ, but the everything-all-at-once-ness of it is universal.
Lately, you’ve taken to holding your little hand up, palm out, and telling me to “Stop” when things aren’t going quite the way you think they should. I’m not quite sure where you got that from, it’s not something that I do, but that idea might be right where you need to start in order to get through a situation like this. Well, without the hand gesture. Most grownups don’t respond very well to that particular gesture. But take a minute. Stop everything. You might even need to tell people that unless someone is bleeding or on fire, you need 5, or 10, or 50 uninterrupted minutes to sort things out. Lock yourself in a closet if you have to, and take some time for yourself.
Taking a long walk is also a great option, if you’re in a place where you can do that. An outdoors walk is best. Yoga is also a great option for releasing nervous energy and helping you regain focus.
Then once you’ve expended a good bit of that nervous energy, come back and pull out a notepad and start writing. Write whatever. Anything and everything that comes into your head. Just dump it all. Let it all out. I call this the brain dump. I got the idea from the Artist’s Way, where you start each day with writing time. The idea is that all these little stressful bits and pieces of everything that you’re carrying around with you are keeping you from connecting with your creativity. While I don’t necessarily do pages every day in the morning, I do agree with the general idea. I find that all that crap floating around in my brain gets in the way of my productivity as well. So just empty your brain onto the page. Shred the pages when you’re done if you like, this is for you and no one else. You’re just clearing your head of all the noise and static.
Now you can start writing your to do list and prioritizing items. This whole process could be done in half an hour or less, but would likely be more effective if you invested a little more time.
Of course this wont make all those emergencies go away. But it will help you dodge, parry, duck, or deal with all the crap that comes flying at you.
I went through that process myself today, and as a result, I’ve decided that your birthday party is not going to happen in March. And since I have a conference and finals in April, it might even be later. I suppose we could just cancel the party altogether, but I do love getting all our friends and family together, and it doesn’t happen very often. I have also been looking forward to using your birthday party as an opportunity to say thank you to all the people who have been so supportive of us through this entire cancer ordeal (and I can’t bear the thought of missing one of your birthday parties). I still don’t know what I’m going to do as far as that is concerned. I just know I’m not going to put the time and energy into a party for this month.
I have already started rounding up and just telling people you are two years old. There’s a part of me that resists this still, but you are behaving like a two year old. Yes, the temper tantrums, and the back arching, and the constant testing of boundaries, but also a more sophisticated sense of humor, you can count to ten, know all of the letters, and draw these amazing little smiley faces.
We’ve had a rough, and very busy month. You even had your first Emergency Room visit with a significant fever and cold. But we got through it all, and we had a lot of laughs, too.
You bring so much joy to our lives. I’ve had a very difficult year, but there has not been one day since you were born where you did not brighten and improve my day.
Curious what radiation treatment is like for cancer patients? This post will walk you through one day of radiation treatment for a patient with breast cancer (me).
Disclaimer: It is important to note that cancer treatments are tailored to the patient and their pathology, so there can be quite a bit of variation in the way treatment is experienced.
Here’s a peek into my experience getting radiated for breast cancer.
My first day with the radiation team did not involve radiation at all. On this appointment, I spent the bulk of my time in a CT Scan machine (no contrast) that was used to take measurements that would be used to design my specific treatment plan. They spent quite a bit of time aligning my body into a specific position, with my arms up over my head, gripping a post at the top of the bed.
Then I was tattooed: four little dots, one on each side at the bottom of my rib cage, and two down the center, one right in the middle of my breast bone, and the other, just below the bottom of my breast bone. They also placed a bag of chemicals under my head and shoulders; as those chemicals reacted to each other they formed a sturdy foam that conformed to my shape and would be a cradle that would hold me in this position for my treatments.
It took about a month to get the radiation plan squared away. Then they called me in for another appointment – no radiation this time either, but this was a run through to make sure all of the calculations were in order. On the last field, they discovered that the frame touched my chest, that’s why they do the run through, so they to called in the dosimetrist, physicist and a physician to make an adjustment to my treatment plan. They also gave me my fifth tattoo two inches below my collarbone. The next day I went back for my first radiation treatment.
Radiation is administered every day except for weekends and holidays. My plan was for 28 days, which was six weeks once you fit in the two holidays. The team was amazing. There was always at least two radiation technicians, and usually three or more, involved in my treatment each day. They worked together, double checking every single setting, and making me comfortable at the same time.
Radiation Treatment
The room in which the radiation was administered was behind a foot thick door.
The ceiling lights had pictures, just like the dentist, only the pictures are nicer.
Tools are laid out, and ready to go. Those markers, very important medical devices. These guys scribbled all over me every day.
When I first enter the room, I lie down on the bed and they put a band around my feet to hold them still, and cover me up with a warm blanket. Oh, I love those warm blankets. I fit my head and shoulders into the foam cradle, and there is a post sticking up at the top of the bed for me to wrap my hands around. The form and the post help a lot with holding still. The bed is driven around a bit to line my tattoos up with the equipment, and then to make adjustments for each field of the treatment.
The machine that administers the radiation is also capable of taking digital x-rays. Once a week, treatment started with x-rays to make sure everything still lined up correctly (this helps them course correct in case of swelling or changes in weight during the 6 week course of treatment).
There’s Jerrod, drawing lines on my chest. The lines were actually drawn on to make sure I was lined up correctly while they administered the field.
Brass Bolus
The first two doses of radiation are administered with the use of metal fabric called brass bolus. The brass bolus is used to help trick the radiation beam into focusing closer to my skin rather than deeper into my body.
If you think my breast is a weird shape, sitting up like that while I’m laying on my back, you’d be right. It’s not really a breast. The breast is gone. That’s an implant called an expander that was put in place during my mastectomy, and it makes it possible for me to get new boobs after I’m healed up from treatment. Aaron calls it my bionic boob.
The expander does require some working around when it comes to the radiation treatments. The brass bolus is used, rather than the foam bolus, because it conforms to the shape of the expander better. You can see from the picture below that its a bit slinky and hugs the curves. Once they get it placed just right, they tape it to make sure it doesn’t move.
Once they get everything lined up perfectly, the team leaves the room. There are several video cameras and the room and they can hear me and speak to me, so it’s not like I’m completely isolated. I don’t feel the radiation, but the machine does hum while it’s being administered. Then they come back in, position the equipment to focus on the another area, and repeat.
Boost
For me, there were two positions with the brass bolus, then two more that focused on my collar bone, and then the final shot involved this contraption; they referred to it as “the boost.”. The purpose of this last shot was to put an electron field right up under the corner of that expande.
Much of the time while they were lining me up, the lights were out so they could more readily see the lasers and make other measurements with light that was projected on to my skin.
Every member of this team was so professional, at the same time, they were able to crack a joke, and keep me laughing through treatment. They made it so I didn’t dread going in every day.
Thank You
Today is my last treatment, so I want to take a moment to shout out to the team. Dr. Janice Kim, Dr. Ermoine, Dane, Jarrod, Randall, Lorena, Jeannette, Sue, Jenny, Talina, Tony, Kelly, Christine, Rowena, and Sheree (and I’m so sorry if I left someone’s name out) – thank you so much for taking such good care of me. And thank you for tolerating the photo shoots while you were working.
I hope this post will help ease your mind if you are facing radiation treatment. If you have received a cancer diagnosis and are wondering what you can expect from treatment, you might also check out my post: Walkthrough of Chemo Day for a Cancer Patient.
A year ago I stood at the mirror, glaring at my left breast which was starting to show the strain of breastfeeding my baby. The good boob, the one on the right, remained as firm and perky as it was when I was 18. I couldn’t have guessed that all that perkiness was supplied by 11 centimeters of cancerous tumor.
I now have a scar that runs from under my arm almost all the way to my sternum. I have 5 little pin-sized tattoos that are used to line me up in the beastly machine that irradiates my skin – which is now burned rough and red from collarbone to abdomen, and breastbone to armpit. In the place where my breast used to be is an implant called an expander (Aaron calls it my bionic boob) with the mission of stretching the skin to hopefully make it possible for doctors to manufacture a new breast once I complete treatment.
My left side is scarred as well, with the tell-tale 2-inch horizontal line just below my collarbone where the medi-port was installed for my chemo infusions. Cancer survivors recognize each other by this this little scar that peeks out from any kind of V-neck top. The port shows through my skin, and my husband and I joked that with these implants and my bald head, I should have dressed up as a Borg for Halloween. Beneath the skin and ribs, my heart has been damaged by the chemo drugs as well.
The memory of wishing that my left breast was more like my “good” boob now brings a chill. But the left breast will soon become a scar as well, as I’m having a second mastectomy with my reconstruction this summer. The type of cancer I have has an extremely high rate of recurrence.
My attitude towards these scars is changing. Each scar tells a story, and since I’m still kicking, each scar represents a challenge I overcame. I’m learning to accept them as a kind of private little merit badge. Having a supportive husband helps. And since the perky boob, the “good” boob, turned out to be evil, it’s worth mentioning that just because something is pretty doesn’t mean it’s good.
I’ve been procrastinating on writing a blog post for a very long time now. It’s Christmas. It’s the end of the year. It’s the beginning of the new year. So much pressure to write a deep, meaningful, soul searching, profound piece that sums up the meaning of life, and what I’ve learned this year. Or at least pull together a humorous and/or touching year in review post.
This year I learned I have cancer. I endured two surgeries, 6 months of chemo, and I’m currently on radiation. I survived. My family survived. I haven’t completely messed up my daughter. yet.
This year was too deep, and too long, for me to sum up in one pretty, little post. Maybe one of these days, when I’ve put some distance between me and what I endured, I’ll be able to write something meaningful about this year, and my experience. For now, I don’t want to think. I don’t want to plumb the depths of my soul. I don’t want to share what’s in my heart. I haven’t processed it yet. That will take some time.
Besides all that, I’ve been sick. I don’t mean cancer sick; I mean coughing, sneezing, mucus like rubber cement, don’t you dare turn on the lights, throbbing sinuses, and it feels like a mile-long hike just getting to the bathroom sick. I’m feeling much better, and starting to dig my way out of the haze now, but this has been lingering since before Christmas. To all of you waiting on a return email, or phone call, I’m sorry. I’ll get back to you soon. If you’re waiting on a Christmas card… ha ha ha. giggle. snort. Yeah, right, it’s been years since I was organized enough to send those out – even when I was healthy.
Don’t get me wrong. I’m happy. I’m afraid the first few paragraphs of this post may have led you to believe I’m bitter and pouting about this year. Not so much. I just don’t understand how I feel about it all yet. I need more time to sort it out.
Early last month, I started the Reverb10 project with such enthusiasm, but found myself avoiding my computer for the month of December, because I knew each new reverb prompt would lead to more thinking. Shudder. I still plan on continuing the Reverb10 project, but on my own timeline. It may take me the remainder of 2011 to finish, and I may not make public all my responses, but I think it’s a wonderful way of reviewing where I’ve been, and making plans for the future.
You still want to know about the day my husband threw up and saved our relationship? Gross. Ok, just kidding, that would have piqued my interest as well. Earlier today, my husband reminded me of this moment in the history of our relationship. That memory is what brought me back to my computer to write, and thus, the reason the title of this post is dedicated to that moment.
Long before we got married, and about 6 months after we met, I decided that falling in love with Aaron would be terribly inconvenient. I wasn’t ready to be in love (this after years of “looking for love in all the wrong places”). I went around the house and gathered up the items of his that had accumulated (CDs, a hat, a shirt… ) and placed them next to the door, ready to send them and him on their way when he arrived at my place after work.
When he showed up, he brushed past me, rushed to the bathroom, and spent what felt like forever in there puking. Monstrous, earth shattering, roaring, I’ve never heard anyone puke like that. By the time he was done, cleaned up, and passed out in my bed, I had given up on thoughts of breaking off the relationship. I grabbed his possessions by the door and redistributed them back around the house. It was too late. I was already in love.
Instead of fighting what is, I needed to accept it (good or bad), and then decide how I was going to respond to it.
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