This seems like a fitting day to share all things surgery related: the run-up, the main event, and the immediate aftermath.
10.16.2024
Happy World Anaesthesia Day!
10.07.2024
Be Aware: Turning 40 Sucks!
Hello again! It has been just over ten years since I felt the need to write about the mundanity of raising small children. Ten years later I have middle- and high- schoolers, a part-time environmental education job, four pets, and cancer. Happy birthday to me! Most of our pictures these days are of me and Joe together watching the kids do something far away.
October is Breast Cancer Awareness Month in the United States, and it has always bothered me. I think I might even have a post about it on this blog. Brands pink-wash everything to "raise awareness" and donate some tiny bit of money towards research. The only awareness I ever gained from this month was that boobs sometimes get cancer. Duh, I knew that already. I did not know anyone under the age of like 65 that had ever had it. Since my diagnosis, it turns out I have two friends that also have/had it and one of the parents of a former student is going through diagnosis right now. All under 40. I also did not know that alcohol and lack of exercise are the biggest risk factors, not genetics. So in the spirit of Pink-tober, I'm going to be sharing my story in the hopes that it might help someone else. I'm thinking there will be four posts. One each covering diagnosis, surgery/immediate recovery, treatment/long term recovery, and paying for cancer/survivorship. Is there something else specific you want to know about? Ask me anything.
Here goes. I think the easiest way to organize this is an annotated time-line full of nitty gritty details. I'm going to bold and highlight pink the sentences that I think have the most important information if you'd just like to skim.
May 8: Five days after turning 40 I had an annual physical exam. I have been seeing the same primary care physician (PCP) for over fifteen years. She knows that I am slightly hypochondriatic and am always convinced that I have MS. (I do not have MS.) For years I've been saying I feel really tired, and for years every doctor I've ever mentioned this too says something like "Well, you're a busy mom. Of course you're tired." In retrospect, this may have been an early symptom. Along with the usual annual exam things, she did a manual breast exam. I have been told from my very first breast exams twenty years ago that I have dense breast tissue and that I shouldn't be surprised if they feel lumpy bumpy and to not worry about it. Turns out women with dense breast tissue have a FOUR TO SIX TIMES increased risk of developing breast cancer. AND it is harder to find in regular mammograms. The doctor felt something on the left side, then went back and forth from left to right a couple of times, and walked over to her computer and started furiously typing. I thought, well that can't be good. She explained that she felt something on the left, but not the right and since I just turned 40 I should be going for my first mammogram soon anyway. But since there was this weird thing, she went ahead and ordered a diagnostic mammogram as well. She said not to worry about it, most of the time it's nothing, and try not to freak out. For whatever reason, this time I believed her. I went home and I didn't worry. After all, everyone had always told me they were dense and it wasn't going to be anything. Just another annoying test. It's also interesting to note that the American Cancer Society no longer recommends self breast exams, or even clinical breast exams! This seems insane to me. https://www.cancer.org/cancer/types/breast-cancer/frequently-asked-questions-about-the-american-cancer-society-new-breast-cancer-screening-guideline.html
June 4: I go in for my mammogram. They walk you to the "Spa Room" where you change into a cheap pink robe and there's a TV with some daytime talk show on and you wait with a bunch of other women until they call your name. A regular mammogram is uncomfortable. They squeeze your boob inbetween two plastic sheets while you awkwardly hug a machine and they take pictures. A diagnostic mammogram is twice as uncomfortable because 1) they're doing it AGAIN with more pressure and 2) they make you stand in really weird positions to get the best angle for the image. Then you also get an ultrasound. Afterwards they have you change back into your regular clothes and wait in the spa room for your results. This is the worst part, watching people who arrived after you leaving before you. It's never a good sign. Then a nurse shows up with a different color folder than everyone else's was and calls your name. Also not a good sign. They walk you to a special little room that is supposed to be private and calming with a fountain and some fake plants. The nurse explains that the radiologist did in fact see a 2x3x4 cm mass and is recommending an ultrasound guided biopsy and they can fit me in the schedule in two days. When you're only 40 and it's looking like cancer things move quickly. Then the radiologist comes in to see me. She explains that regardless of what the biopsy results are, whatever this mass is will have to come out. So at the very least I am for sure looking at surgery of some kind in the near future.
June 6: The biopsy was scheduled for early morning. I head back to the same hideous spa room and wait. A biopsy is where they take a chunk of tissue and send it to a pathology lab to see what's in it. The doctor explained they were going to use a local anesthetic to numb the area, and the only thing I should feel is pressure, but no pain or stinging. So they inject the lidocaine, wait a few minutes, then insert a large open bore needle. The doctor takes the first sample, KACHUNK, and it hurt. Like a lot. I'm pretty sure I whimpered. I told the doctor that I definitely felt that, so she stopped and injected more lidocaine and I had a mini panic attack before moving on. She took six samples, and the rest were thankfully all numbed. Then they drop in a titanium clip to help with further imaging and surgery. After the biopsy you have to go have another mammogram to make sure the clip is visible. And let me tell you, if a regular mammogram is uncomfortable, having one immediately after having chunks of your boob cut out is even worse. As I'm hugging this loud machine, weeping and visibly upset, the tech says again, "I've had three of these it's probably nothing". I understand that doctors and nurses don't want to cause unnecessary anxiety, but hearing over and over again about how it's probably nothing only makes it worse when it's not nothing.
June 8: The test results pop-up in My Chart on a Saturday in the middle of Thomas's hockey game. No phone call, no explanation, just the raw pathology report, followed by a panicked weekend of deep Googling:
Invasive ductal carcinoma, low grade
Estrogen receptor 92%
Progesterone receptor 98%
HER-2 negative
Ki-67 35% (unfavorable)
June 10: I finally get a call from my PCP who was really upset the report was released directly to me instead of being held until she could view the results and call. I get set up with a Breast Health Nurse Navigator, a pair of RNs whose only job is to manage breast cancer patients. They help get insurance approval, set up appointments, provide resources and education, and are the easiest to get ahold of for questions. These women are incredible. Maybe it's because they don't provide any medical diagnoses or treatment so it feels less judgey, but they are easier to talk to about whatever million questions pop-up in the middle of the night, whatever random internet advice I've found, or whatever alternative treatments I have questions about. They see all of your communication with all of the doctors and all of your test results and help follow up if it seems like the doctors haven't gotten to something. They also have seen so many different women, going through all the different kinds of things that come with this diagnosis, and they just know a lot about the medical system, how to get insurance to pay for what you need, and make you feel less lost.
June 12: By the time this appointment rolls around I am just a giant ball of anxiety. From all my Googling I've figured out that there is 97% survival rate at 5 years, 94% at 10 years, and 90% at 20 years. When you've just been told you're already in the 2% that got cancer, those numbers are NOT reassuring. It feels like there's no way you're going to be in the majority ever again and suddenly 20 years is not a long time at all. The oncologist explained that this is cancer in a milk duct that has started to spread to nearby breast cells and that the treatment is surgery to remove the cancer, then depending on what they find during the surgery possible radiation and chemotherapy, and definitely 5-10 years of hormone therapy. The strong ER/PR and HER-2 neg results are all good things. It is the most common type of breast cancer, and the easiest to treat. A Ki-67 number over 30 (out of 100) is an indicator that the cancer was growing quickly, and might mean a higher risk of recurrence.
June 14: After spending six days researching all the different types of surgery possible, I finally met with a breast onco-surgeon. She explained that there is no difference in long-term outcomes between a lumpectomy with clear margins, single mastectomy (SMX), or double mastectomy (DMX) with or without reconstruction. It seems weird that your risk of recurrence doesn't go down if you remove breast tissue. I understand they can never guarantee to get ALL of it, but it seems like less boobs should = less risk. You get bumped to the annual mammogram club for monitoring, so they will likely see a recurrence quickly. But then, she pulled up the images of my mammograms. The regular mammogram, that I would have gotten anyway just for turning 40, SHOWED NOTHING. The surgeon said the radiologist would have looked at this and said everything was fine. If my PCP hadn't felt the lump I would have never known. In that very second I knew I was going to have a DMX because I would never sleep again knowing that the standard imaging test didn't even show the cancer.
June 19: Back to the hospital for an MRI. For a breast MRI you are laying face down ona table with two holes for your breasts to sort of dangle freely in. So it feels less claustrophobic, but definitely weird. The MRI confirmed the size and location, far from my chest wall and the skin, and the closest lymphnodes looked clear. It also did not find anything in my right breast. That is all good news because it looks likely that it hasn't had the chance to spread.
June 28: I am generally terrified of surgery. I hate the idea of general anesthesia. I have a very low tolerance for pain (even though I've given birth drug-free), especially long-lasting or stinging pain. And I really don't like taking strong pain-killers because I'm terrified of becomming addicted to opiates. Not that I've ever had a problem with that, it just seems like the kind of thing that might happen to me. The onco-surgeon had me meet with a plastic surgeon to talk about all the different reconstruction options. As soon as he said the words "necrotizing nipples" I was done. I wanted the surgery to be as simple and quick as possible. And I wanted the shortest possible recovery with the least amount of potential complications. So after talking with Joe, I decided on an Aesthetic Flat Closure (AFC), and the surgery was schedule for August 5.
July 3: I had to meet with my PCP one more time to be cleared for surgery. I did take a little bit of joy at being able to say "Ha! This time it IS cancer!" when she walked into the room. Thankfully she's a good sport.
Aaaannnnddddd..... that's how I was diagnosed. Ask me anything about anything and I'll answer as honestly as I can. Next week, all things surgical.
3.17.2014
Feeling Lucky
2.25.2014
Good Eats
The one recipe I keep coming back to is shepherd's pie from The Baby Bistro Cookbook. This is a fairly ridiculous book that is a little too sanctimonious for me, but it has great recipes.
Ingredients:
2 potatoes, peeled and cut into 1" pieces
1 pound ground beef or lamb
1 small onion, chopped
1 cup tomato sauce
1/2 cup milk
1 cup frozen thawed mixed vegetables (peas, carrots, corn, etc.)
1/2 cup shredded Cheddar cheese
*Note: I use instant potatoes because it's easier so I skip a few steps, and I've used bison before. So good. Also I never measure cheese. I just shredd it until I have enough to cover it.
Directions:
Preheat the oven to 375*F.
Put the potatoes in a medium saucepan with enough water to cover. Bring to a boil over high heat. Reduce the heat to medium-high and continue boiling for 10-15 minutes or until the potatoes are tender when pierced with a fork.
While the potatoes are cooking, in a large skillet, cook the ground beef or lamb over medium-high heat, crumbling it with a spoon. Spoon off and discard any excess fat. Add the onion and cook, stirring occasionally, for 10 minutes or until the onion is translucent. Stir in the tomato sauce and remove from the heat.
Drain the potatoes and return them to the saucepan. Add the milk to the potatoes and mash until smooth. Spoon the meat mixture into a 2-quart casserole dish. (I used a pie plate.) Top with the frozen vegetables. Cover with the mashed potatoes and sprinkle the Cheddar cheese on top.
Bake for 30-45 minutes or until heated through and the potatoes are just slightly browned.
2.21.2014
Love Buzz
This year I started the holiday off by dying my hair. The color is officially called 'Dark Auburn'. It's more dark than auburn, which is fine by me. I've had grey hair since I started grad school, just a few hairs here and there. Each kid gave me a few more, and now when I put it up in a pony tail I can see the wiry grey buggers sticking out all over the place. I never thought I would be the kind of person to be bothered by this, but I sure was. It makes me look SO OLD. And since I'm not yet 30 (at least for another couple of months) I decided enough is enough. A little semi-permanent hair dye isn't going to kill me. And I love it.
Lily's school delayed celebrating until the next week, so it was just a regular day at school. And a regular day of Thomas desperately trying to convince me that he, too, is in fact big enough to stay at pre-school with his favorite sister.
I had been looking for an excuse to buy Lily the Frozen Castle Playset and Valentine's Day seemed just right. My mom had previously bought her the barbie sized dolls, and they were just begging for an appropriately scaled mansion to live in. She LOVES it. I can put on the soundtrack and she will happily sit there and play for like an hour at a time. It's fantastic. She prefers to use the small clip dolls when she plays by herself because they're easier for her to manipulate and change their clothes, but when we play together she likes to use the bigger ones. It's so fun.
I don't even remember what this is all over his face, but it's still cute.
We made some Valentines for the grandparents and Lily worked really hard to write her name on all of the ones she needed to bring to school. We were going to make our own Valentines for everyone, but once Lily saw the Disney princess ones at Meijer, it was a lost cause. And, honestly, it was enough work just to get her to write her name on them I can't imagine trying to make them all, too.
Finally, Joe met us for dinner at the Buzz Cafe, here in Oak Park. They were hosting a fancy family dinner with a prix fixe menu. It was so awesome. I would highly recommend this to anyone with small kids who wants a chance to actually go out and eat a nice dinner on Valentine's Day. It was sort of an expected disaster. It took about 15 minutes to seat us, even with the reservations, but everybody was just waiting together, a bunch of kids played together, and people kept good attitudes. Then because the menu was set, the staff didn't have to waste time taking orders, they just brought stuff right out. And it was BYOB, so we got to bring our favorite cheap wine, Koonunga Hill. And it was close enough that we got to drink the whole bottle. They had fun food for the kids, good food for the adults, a guy playing the keyboard, and it was loud. Kids were talking loud, babies were crying or just making baby noises, and it was all ok. This is the most horrible picture of me ever, but it's the only one we got that night.
This is one of my favorite restaurants in the whole world. We go every Saturday morning for breakfast and to see Joe's dad play with the Farmers' Market Band. I went there today for lunch with the kids because it had been a long morning and they serve peanut butter and jelly. There's a space in the back for the kids to play while waiting for food (not on Saturdays) and the servers are always super nice. I just love it.
So for the first time ever, I think, I can honestly say I had a great Valentine's Day.
2.08.2014
Happy
There have been a few articles making the rounds on Facebook about things you'll miss when your kids are older. And I read them and always think, yeah, well, everything's better when you're remembering it. I kind of smirk and think you just don't remember how much it sucks.
This morning in my inbox was an email from the Park District of Oak Park proclaiming that they are looking to hire people for the summer. Specifically, environmental educators to teach summer camp at the Oak Park Conservatory just a few blocks from our house. My first thought, this is perfect. This is exactly the kind of job I'm looking for right now. Something education and environmental related. Close to home. Doesn't start until June. Only for the summer. Perfect.
Then I thought about all the fun things I'm looking forward to doing this summer. Baseball games, the zoo, taking the train all over the city, gardening, running, swimming, playing. And most of all, not having a schedule. I am usually the type of person who LOVES having a schedule, but right now I'm feeling kind of trapped by it. So the spontaneity and hours of summer sunshine hold the promise of freedom and happiness. I'm excited about having two KIDS, not babies. I'm excited about being with those KIDS, who can walk and run and jump and explore and dig and splash. And suddenly, working four days a week from 8-4 doesn't sound so great.
After breakfast, Joe took the kids for a museum adventure downtown. I got to go to a yoga class, walk home in the very pretty snow (I can't wait for it to go away, but when it's falling it is so very pretty), straighten up the house, make myself lunch, and just catch my breath. Now I'm sitting on the couch, in a clean empty house, watching the Olympics, sipping tea, soon to be knitting, and what do I want? I desperately want to kiss Thomas's chubby face until he giggles uncontrollably and gives me the biggest, bestest baby hug ever. I want to answer Lily's 1,437,568 questions about the Olympics, princesses, snow, and the meaning of life. I spend all day, every day with them, and now that I finally get a chance to be alone, once the house is clean, all I want is to be with them some more.
I'm surprised to realize that in spite of myself, I am enjoying this season of life. That the trite expression 'The days are long, but the years are short' is true. That I am, in fact, happy.
1.18.2014
Gym Rat
1) I am a runner. That means I run outside, rain, shine, snow, cold, whatever. The gym is for when you're sick or injured, or for lifting. And that lifting has to be serious free-weights, not little two-pound dumbbells and certainly not machines.
The truth is, I am currently not a runner. I haven't run since last summer when we first got the double jogging stroller, and the reason I haven't run since then is because I went at it too hard too fast. So I need to start with walking, then add in SOME jogging, and maybe eventually I will be a runner again. That largely depends on how my crazy, self-dislocating hips hold up. Another truth is that I have become a huge weather wimp. I don't like it to be too cold, too hot, wet, humid, or pretty much anything other than room temperature. By joining a gym, the weather stops being a excuse not to work out.
2) Working out with your kids is easy and fun! Pop in a video, do some yoga together, put them in the stroller for a jog! It's so great for them to see you being healthy!
That might work for some people, but it absolutely has not worked for me. I've tried doing a video while Thomas naps in the morning, but he invariably wakes up half way through and cries while I finish the rest of it. Doing yoga with two little people around is IMPOSSIBLE. I could deal with the distraction and not being able to really focus, but I can't handle being in downward dog and one kid is climbing onto my back while the other is trying to pants me. As for the stroller, I prefer not to have them strapped into things for long periods of time if they don't have to be. Lily does like to run with me sometimes, so when it's really nice out again we'll probably go for short runs together and I'll push Thomas. That'll be great. When it's warm. The gym has child care. Cheap, cheap childcare. And if I time things right, I get to take a shower. Alone. It's glorious.
3) I'm an athlete. That means you have to compete.
I really like to run races. I'm not competitive in the sense that I want to win, I'm competitive with myself. Faster, farther, better splits, whatever. I try to improve something each time I enter a race. And I will do races again. Just not yet. I did the Monster Dash Half Marathon when Lily was 15 months. Thomas will be almost 2 years old by the time that comes around next fall, and MAYBE I'll be ready to do it. We'll see. It's sort of a flexible goal. While I was walking on the treadmill (at 10% incline doing speed intervals) a 50ish woman hopped on next to me and started jogging. It took all of my self-control to not join in. I want to run. I will run. Just not yet.
4) I should be taking advantage of my time alone with Thomas while Lily is in pre-school instead of shunting him off onto someone else.
When Lily was a baby, we did a bunch of baby classes. Baby yoga, baby music, baby art (yes, such a thing exists), story times, baby gym. Everything. But I think that mostly was just an excuse for me to get out of our apartment and interact with other adults. Also, it taught me how to interact with my baby. I honestly had no idea what to do with the tiny person they let me leave the hospital with. For Thomas, I feel absolutely no desire to do those things. We do all of those things, sing silly songs, read baby books together, have a tiny plastic slide, play with a million blocks, all day everyday. Sometimes with Lily, sometimes without. Because we co-sleep he's literally within arms reach of me for 24 hours a day. One hour a day less is not going to make a big difference for him, and it absolutely makes a big difference for me. "Exercise gives you endorphins. Endorphins make you happy. And happy people just don't kill their husbands (or children)." - Elle Woods, Legally Blonde. And he gets to socialize with other kids. Double bonus.
So these are things I've had to accept. And after going the past two days, I have to admit it's totally been worth it. I can't wait to go back on Monday and walk a little faster, a little farther.