Happy World Anaesthesia Day!

This seems like a fitting day to share all things surgery related: the run-up, the main event, and the immediate aftermath.

One of my goals after turning 40 was to finally focus on my physical health once again. Long-story-short, family stress and aging and the pandemic lead to gaining almost 40 pounds over the past five-ish years. This was gonna be my year to start reversing all that. I lost about 20 pounds last year by focusing on nutrition.  And this year I was excited to add in more exercise and build back my strength. After finding out I was going to need surgery, it only doubled my desire to get stronger. I found Heather Robertson’s home workout videos on YouTube and committed to doing three a week interspersed with my perennial favorite Yoga with Adriene. In 8ish weeks I ended up gaining a lot of strength and flexibility, and I lost 7 more pounds. These pics are from a few days before the surgery. I felt really good about my efforts to go into this in the best shape possible. 

Getting ready for surgery meant a lot of appointments. First I met with a nutritionist through Wellness House, a non-profit that offers free programs and services for people affected by cancer. Did you know 40-something women are supposed to be eating AT LEAST 100 grams of protein a day? That is insanely hard to do without eating 3000 calories unless all you eat is chicken and broccoli for every meal. I wear a Fitbit on and off, but I really don’t like tracking my calories on the same app as my steps because then I see that I burned x number of calories and way over eat to compensate. So I sprung for the paid version of LoseIt! I really like the functionality of this app and the ability to track protein, fiber, and total calories. I highly recommend it if you’re looking for a nutrition tracker. 

I also had an appointment with a lymphedema physical therapist. They measure your range of motion and arm volume before surgery so they can compare it afterwards. Then a physical therapy plan is designed based on what you need. 

MOM SKIP THIS PARAGRAPH

Most of the time I was completely at peace with my decision to have my breasts removed with no reconstruction and couldn't wait for the surgery to come so it could just be over with. I talked about it a lot with Joe to make sure he was also ok with this decision. Yes yes, my body my choice and I was going to do whatever I wanted anyway, but I think it's important to hear and honor your spouse's wishes as well. That's why I don't have a full sleeve tattoo and eight thousand piercings -- Joe isn't a huge fan, and I want him to still like me. So I have a few tattoos and piercings and we're both happy with that. Without getting too intimate, let's just say we both really enjoyed my boobs. The lead up to surgery was rough. I ended up crying everytime we had sex, which made it not fun for anyone. Then I would stay up late reading horror stories in support groups about women whose partners just couldn't handle the change in their body and their relationships ended up falling apart. Joe has always made me feel desireable and sexy, through all the changes that happen from age 21 to 40 and having kids, and deep down I knew that wouldn't change. But man, it was still super scary at midnight. 

MOM YOU CAN COME BACK NOW

I decided to throw myself a party to say Tata to my tatas. Everything was planned and ready for a party in our backyard, and then the village decided they were going to spray for mosquitos that night. My truly incredible friend Julie said screw that, come have your party in my yard. She was the most delightful host and made it super awesome and everyone brought something to share. I posted the invite on Facebook, and women from every corner of my life showed up. Grade school and high school friends, work friends, mom friends, nature-nerd friends, and a few friends of friends who just tagged along. It really meant the world to me. The most gorgeously thoughtful Sol put it in words best, " I saw women pulling threads from their pockets to weave assurance into a wound we all fear."

Finally, August 5th rolled around. We dropped off the kids at my parents' house, boarded the dog, and Joe cleared his work schedule. The surgery was scheduled for 11:30am, but we had to be there by 7am for all the pre-op procedures. I had to fast for 12 hours before arrival, so I hadn't eaten anything since 7pm the night before. I do not do well without coffee and breakfast, and it was a big scary thing we were going to do, so I was not pleasant at all that morning. Similar to the whole summer, there was a lot of hurrying up and waiting. The surgeon popped in to do a final physical assessment, the anaesthesiologist came in to introduce himself, so many nurses, and I had to take a visit to the Nuclear Medicine department to have my lymphnodes mapped. They use a really tiny needle to inject radioactive die all around your nipple, it felt like 8 tiny bee stings that stopped hurting immediately. Then you wait half an hour and they check you with a geigercounter and some kind of imaging machine to see which is the sentinel lymphnode, basically the first one that everything passes through. That one will be biopsied during the surgery to see if the cancer has spread to other parts of my body. 

Then it was time to say goodbye. I am terrified of surgery and anaesthesia, so in the days leading up I had written letters to the kids and hid them in my sock drawer in case anything happened. I also made short voice recordings for them on my phone. I couldn't find the words to write or say to Joe, so I just told him where the letters were. When I was 10 I had an appendectomy, and I remember being given the anaesthesia before going into the operating room, so I was not expecting to be wheeled into the operating room awake. But that's what happened. It was so bright and white and there were so many machines and lights and instruments and people. The surgical staff all introduced themselves again and I had to climb up onto the operating table. Then it felt like as soon as I laid down I was out. 

When you first wake up you're in what's called Recovery 1 where they make sure your vitals are stable, your pain levels are ok, and start to give you some food and water. I was there for about an hour, and then I was moved to Recovery 2 where Joe was allowed to come back. I was SO HAPPY to see him. I didn't really feel any different. You're wrapped in so much gauze and bandages and a compression bra it practically looks like you still have a chest. The surgeon came out and said everything went great, they were able to remove all of the cancer but they did find isolated sells in the sentinel lymphnode so they removed all 14 axillarly lymphnodes connected to that. Thankfully all 14 of those were negative, but it was a slightly more extensive surgery on my left side. They put in four surgical drains, two on each side to help reduce swelling. Everything felt tight and it was hard to move my arms. Then I was discharged to recover at home. Riding in the car was the worst every bump and every press against the seatbelt was nauseating. Not painful, just ooky and made me feel really sick. 

I think me and Joe had pizza for dinner that first night, but I don't really remember. I was given a nerve block that lasted about 24 hours, but when the surgical pain killers started to wear off I put on my big girl panties and took the hydrocodone. I was also to alternate it with ibuprofen to help keep the pain level low and constant, not fluctuating up and down, so every three hours I was taking something. I FaceTimed with the kids, it was so good to see their faces and hear their voices. Hydrocodone turns me into a delightful chatty Kathy, so for the next 24 hours or so everything was great! After the nerve block wore off though, days 2-7 were the worst. I had to set alarms to take hydrocodone/tylenol or ibuprofen every three hours, even through the night, or the pain would get out of hand. Everything hurt. I was stiff, but I had to get up and walk as much as possible and use my arms below the shoulders as much as possible to help facilitate healing. Using cold packs in pockets on the mastectomy pillow really made things feel better, so I would leave them on for like an hour. Definitely not the doctor approved method and when I checked in with a nurse the next week she was like please only do 20 minutes on and 20 minutes off. Those days are blur of Joe taking care of the drains, napping, binging Fallout, icing, slowly walking around the block, and just generally feeling miserable. On Day 7 the kids came home, and the next day the dog returned. 

This post has been long enough, so the saga of the drains and long-term recovery will come next week.

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.