Scan day kind of snuck up on me this time around. I didn't really think that was possible, but more than four-and-a-half years in, this path I'm on still surprises me.
And it's been awhile, so my oncologist ordered a PET/CT instead of just a CT.
My very basic understanding of the imaging processes is that a CT scan exposes me to less radiation (but still something like 6 months' worth of normal everyday radiation, all in one sitting). Using x-ray technology, a CT scan shows cross-sections of my bones, organs and tissues, as if I'd been cut into teeny tiny slices. If something abnormal -- a tumor, say -- were present, the images would show where and give my doctors a pretty precise idea of its size.
In a PET scan, by contrast, I show up to the scan after fasting all morning and avoiding carbs the day before. (I AM FREAKING HUNGRY AND I NEED COFFEE.) Prior to the scan, I'm injected with a radioactive glucose, the idea being that any cancer cells would eat it up and then light up on screen. This "uptake" is then measured to give doctors an idea of how active (or not) any cancer is. There's quite a bit more radiation exposure with a PET scan since, well, they INJECT ME WITH RADIOACTIVE GLUCOSE.
(That tube right there is connected to my port; that radioactive sugar -- stored in that lead capsule to avoid exposure to the technicians -- is going pretty straight to my heart.)
In fact, I'm specifically told not to be in the vicinity of children under the age of 12 or pregnant women for four hours after leaving the hospital.
I don't know why, but this fact makes me extra emotional.
***
Chris and I were discussing logistics yesterday while Quinn was in the car. Quinn has heard so much in his five years. My medical issues are a part of our day-to-day lives and lexicon, and I don't often think to filter myself, especially when to some degree we're just talking about pre-school pick-ups and doggie daycare. I was telling Chris that since I'm supposed to avoid pregnant women and children for four hours, it might be best to take the puppy to doggie daycare, too, to avoid risk to her. Out of an abundance of caution.
Somehow, this is where Quinn's ears perked up. "Why can't you be around kids?" he asked from the backseat.
"Because some of the stuff they have to put in me for the pictures they're taking is radioactive, and it's not safe for you to be around. But it'll be fine by the time I pick you up from school," I said.
"What's radioactive?"
At which point Chris chimed in, trying (I think) to be funny but also to educate our 5-year-old. He is, after all, a professor of geology. "Radiation is the energy released when an unstable isotope of an element changes to a stable isotope."
"Huh?" Quinn and I both said.
"Um, it's just something to help them look inside mommy, like an x-ray, but stronger, and it means I can't be around you for a little bit. You'll be at school so you won't even know the difference," I tried.
"But you can't be around me for four hours," Quinn said, clearly getting anxious about it.
"I don't want you to worry about that, buddy. Four hours is like the time from when I usually drop you off until when your friends have nap time. Please don't worry," I said.
"It's really hard not to worry about it," he said, and my heart broke open a bit, again.
I turned around to hold his hand, then. "Please don't worry, okay?"
Please. Don't. Worry. Don't worry about mommy leaving you, about my scans, about anything at all, my little man. My child.
***
So this is Monday. This is so many days. I hate cancer.
How has it been a year since I wrote the last one of these? How are you FIVE? Time is a funny thing, isn't it? A couple of weeks ago, on the way to school, you asked me what makes today a new day. I explained that the earth rotated one full turn, that every morning is a brand new day.
"But what makes it different?" you wanted to know, after you figured out that we're always spinning in space -- too slowly to feel, too quickly now that I'm a mom.
"Today we get to choose to be awesome!" I said, apparently having gotten a good night's sleep the night before and doubled up on my morning coffee. "I'm going to try to be an even better mom to you. What are you going to try today?"
You said something ridiculously sweet, like, "You already ARE a good mommy!" Because that's who you are, how big your heart is.
A few days later, we heard this song on the radio about trying everything.
"How is that even possible? For one person to try everything? I don't get it! What does that even mean?" you said, your inflections slaying me. I basically want to carry around a recorder and catch your voice all the time lately. You talk almost incessantly around your dad and I, and I still can't get enough of it.
That morning, we talked about living an adventurous life, about exploring and traveling, about being open-minded. I don't think you'll have any problems in this regard (except maybe when it comes to trying new vegetables). I love seeing the world unfold through your eyes.
For weeks, I'd been filling out family information forms for kindergarten, with questions along the lines of "describe your parenting style" and "what are your child's strengths" and "list anything you would like to keep out of your child's early childhood experience."
I would say my parenting style varies between nurturing -- perhaps to a fault, if that's possible, because I've always loved you with the fear of cancer lurking in the background, wondering how long my luck could possibly hold, so I dote on you a bit -- and freaking out because we're running late yet again and no one can find their shoes or sunglasses and I forgot it's my day for snacks at preschool. I am not quite sure how we're going to get to kindergarten by 8:30 a.m. come August.
But I'm at the point where I can pretty confidently say I think I'll be here to see you start kindergarten (knock on wood), so I'm not really going to sweat it if we're a few minutes late the first week or if your socks don't match.
Your strengths are easy. You are creative, helpful, thoughtful, empathetic as they come, curious, adventurous. I ran out of space on these forms to say all the wonderful things about you. In one of my favorite birthday cards you received, a friend of yours wrote that what he loves about you is how funny you are, then included a story of you standing in front of a mirror at school, saying, "Why are you copying me?" Please don't ever lose your goofiness.
What do we want to keep out of your early childhood experience? Bullying. Violence. Meanness.
What I didn't write: cancer. I wish I could have kept that out, but no one asked me about that one. What goes without saying: death. I really don't want that to be part of your childhood any more than it already has been.
Two days after your birthday, the three of us boarded a plane to Kauai, where your grandparents had requested their ashes be spread. Our second day there, we found a guy who would take the three of us out on his boat to scatter the ashes in the Pacific. You wanted to know why Grandma and Grandpa wanted their ashes spread at sea, what it meant to be cremated, whether it hurt them, where their bodies are now, what happens to us when we die. "What is heaven?" you queried, the end of a long line of questions to which I have only vague answers. I may not have all the answers, but I love the richness of our conversations lately.
I am still scared for the day when you start asking more questions about cancer.
I write these letters to you as the time comes, to reflect on the last year. I don't write them in advance, and I haven't done one of those "cards for every potential occasion I might miss as you grow up" kinds of things. If I died tomorrow, this would be it: whatever I've written for youhere, plus snippets in your baby book. I haven't wanted to go down that "just in case" path. I've wanted to believe I'll be here to dance at your wedding instead.
But honestly, I wasn't really sure whether I'd be here for your fifth birthday when I was diagnosed with metastatic breast cancer four-and-a-half years ago. The statistics aren't great, but as your Grandpa Jim would have said, "Statistics don't mean a thing for the individual." You'll have to forgive me if I was a little emotional when you woke up last Sunday and found me in the kitchen drinking coffee and looking at baby photos of you. You declared, "I'm five!" and have said it intermittently over the last week. Riding your bike with no hands yesterday, you stepped it up with, "Being five is AWESOME!" because, obviously, no hands.
Four was pretty magical, too. My heart already aches at how much I'm going to miss our days together when you're in school full-time, busy with activities and friends and all the exciting growing-up stuff on your horizon. But the flip side is that my heart swells with gratitude and hope that I might be here for more and more of it. That you might get to know me like I know you.
A photo posted by Jen Campisano (@jencampisano) on
You question everything, want to see the proof. "Just trust me," or "because I said so," are never going to be enough for you. Some days it makes me batty, but at the same time I love your insatiable curiosity, your not being satisfied with the easy answer, your constant desire to hear the full truth.
I slipped and told you to keep track of your shit the other day, after you'd asked me for the gazillionth time where something of yours was. You stopped, because you knew somehow this was a word I shouldn't have said.
"What's 'shit'?" you asked, a half smile spreading across your face. "'Shit' is a funny word," you went on.
"It's a mommy word, and you shouldn't use it," I said.
"Tell me what it means, and I promise I won't say it," you bargained.
"It's basically poop," I said, hesitant. What had I gotten myself into?
You laughed, and looked at me funny. "Mom, you just told me to keep track of my poop!" Ha ha hahahahaha. Ha. Mommies are hilarious.
To your credit, you haven't repeated the word since (knock on more wood).
***
At night, when I'm tucking you in after we've read your three stories to you -- or lately, you reading to us! -- I tell you I love you more than anything. "I love you more," you say most of the time.
"I doubt it, but tell me how much," I say. I love to hear where your imagination goes.
"I love you to the end of space, past all the galaxies, times infinity," you say, "then back into your heart for you to keep forever." Then: "What's after space?" Of course.
"That's SO much!" I say. I wonder where you come up with this stuff. "I love you that much, too, buddy. And I don't know what comes after space. It's a mystery."
You ask me if I'll still love you when I'm dead. "I think a part of me will, even after I die." What do I know? Anything is possible. I hope that won't happen for a long, long time.
"I think so too. I'll miss you so much," you tell me. I try not to cry. Sometimes I succeed, sometimes not. And you lean in for a bear hug. You're so great at those, and I'm amazed at your strength.
I received a surprise email last week, letting me know I'd been chosen as one of Healthline's Best Metastatic Breast Cancer Blogs of 2015. I didn't even know my blog was being considered! The email went on to say that "Healthline’s editors carefully selected each winner based on quality, frequency of updates and contribution to the community. You can see the full list here: http://www.healthline.com/health-slideshow/metastatic-breast-cancer-blogs."
I am beyond honored to be included among some of my favorite people in this community. It's a community none of us wanted to be a part of, but here we are writing through our experiences, sharing our hopes and fears, and even advocating for change in the research world. If you're reading this, I encourage you to take a peak at some of the other honorees' sites. These are some badass women.
And I do think we're collectively starting to make a difference. People in high places are starting to take note of the plight of those living with metastatic breast cancer. I, for one, can't wait to see the end of MBC as we know it. We're not there yet, but just since my diagnosis four-and-a-half years ago, the average life span is already starting to increase for those with mets.
HURRY UP, RESEARCHERS!!!
I received this fancy badge to embed on my site, which you may have noticed on the sidebar. I'm humbled, and honored, and so incredibly appreciative of your support -- my readers, friends, and family -- over these past several years. Thank you for keeping me going.
Thirteen days after my diagnosis, I started this blog. I started my first round of chemotherapy (Taxotere, Carboplatin, and Herceptin) the next morning. I was scared out of my mind, but eager to eradicate this beast inside of me. Initially, I intended my blog to be a means of communication when medical information was seeming to come in at warp speed. A good friend suggested it, and I thought it would be easier than sending the same email to concerned friends and family a hundred times over.
I never expected my little space on the Internet to blossom into what it has become, a therapeutic outlet for me that has also embedded me in a powerful community of thrivers and advocates, moms and can't-be-moms, daughters, sisters, and wives. I didn't expect I'd have my heart broken so many times. I didn't even really expect to still be here nearly five years later. I didn't expect that I'd have strangers reach out to connect with me through the ether to tell me their stories and say thanks for sharing mine. Words have so much power. Thank you for reading mine.
I am in the throes of planning Quinn's FIFTH birthday party, by which I mean I'm browsing Pinterest to see if there's a chance in Hades I could pull off a Star Wars cake (or cupcakes), or if I'm better off ordering them from a professional. I can bake, but pastry decoration is a whole other level of domesticity that I do not possess. Also, do Quinn and his friends really need "Yoda Soda"? Or light sabers made of frosting-dipped pretzel sticks? Who am I kidding???
I'm also trying to make sure he's signed up for the right soccer camps but not too many because I don't want to overdo it. I'm still pretty sure we're over-doing it. And every preschool mom I know is debating kindergartens right now, figuring out where our children have been waitlisted or accepted, attending "meet-the-teachers events," waiting to be interviewed (yes, interviewed), determining which environment will be the best fit for our kiddos, and wondering WHEN THE HECK KINDERGARTEN GOT MORE COMPLICATED THAN CHOOSING A COLLEGE.
In the midst of this beautifully normal life, I've been scheduling doctor's visits -- scans next month, the follow-up with my oncologist, and another for me with my dermatologist last week for something on my elbow, the biopsy of which came back as "needing treatment," although not cancerous. It turns out it probably just needs some steroid cream, but I'll have a follow-up in 3-4 weeks to be sure.
Because more doctors were what was missing from my life.
So I'm worrying (just a little) about my elbow, which I should have more info about at the end of this week, wondering whether our puppy is getting enough exercise, trying to teach Quinn about eating the RAINBOW, and occasionally it hits me how lucky I am to be able to worry about things that are not cancer. (Side note: the rainbow thing is legitimately working. He tried red bell peppers, purple sweet potatoes, cauliflower tots, and ants on a celery log and only balked at the red pepper.)
"I LOVE sweet potatoes!" even came out of my son's almost-5-year-old mouth. Parenting for the win.
***
Last week, I finished reading Room, about a 19-year-old woman who is abducted and locked in a room. (The film has been nominated for a few Academy Awards). The woman is repeatedly raped by her abductor, gets pregnant, and has a little boy, who is five years old as he narrates the story. This room and his mom (and the occasional visit from their captor) are all of the world he's ever known. It is a story about how they manage, and eventually how they escape. But more than that, it is about the love between a mom and her son and how that carries them through, how it saves them both.
This book hit my emotions like a ton of bricks, and I can't recommend it enough if you have a five-year-old (or nearly there) in your life. They're pretty special people, and I'm pretty sure their love could save the world. So maybe there will be homemade light sabers at Quinn's party after all.
As I said, I'm working on a few advocacy endeavors, trying to figure out what I'll do with all my free time once this puppy is potty trained and Quinn is in kindergarten next year. KINDERGARTEN! I swear he was just learning to walk last week. Now look at him go (in the dark green).
One of the things I've signed up for is an advisory role for a conference taking place in Chicago in April. It's on how to build better online communities for healthcare, how to amplify our voices as patients and find each other as we stumble around in the dark after a devastating diagnosis, waving our little candles of shared experiences at one another.
Can you relate? Have you got an online presence in the healthcare space? Are you living with a disease -- whether cancer, diabetes, mental illness, HIV/AIDS, you name it? If so, I encourage you to apply to attend.
If selected, each participant's airfare, provided meals and hotel costs will be covered by Janssen and you will receive a formal agreement for your review and signature indicating that you agree to these terms. Janssen is accepting applications through February 22, 2016.
"The mission of HealtheVoices is to provide educational tools, resources and inspiration to help you better serve, expand and grow your online communities. We believe our 2015 conference was a great success because of the close connections that were formed across multiple health conditions, and we want to encourage you to consider being part of the conference again this year.
This year’s conference will feature nationally recognized keynote speakers focused on the power of online patient communities. New sessions will highlight the value of video blogging, how to maintain consistent fresh content for your communities, growing your impact as a patient advocate, while returning favorites will dive into new areas in analytics, how to handle compassion fatigue and more!
Janssen will once again be covering costs for travel and hotel accommodations."
You can see my post on last year's conference here, help the folks at Janssen's partner Everyday Health out by taking a survey about why you read my blog (and others) here, and look at some of last year's highlights and SUBMIT YOUR APPLICATION TO ATTEND THIS YEAR'S CONFERENCE HERE. I hope to see you there! And if I miss you in April, I'll be returning to Chicago in June, but that's a post for another day.
