Goodbye 2020, We Will Miss You Not
“2020 is the worst.” We’ve all said it. So cliche, but let’s be honest, who’s actually had a good year? One of the hundreds of memes I ran across this year was “If 2020 was a husband” over a picture of King Henry VIII. “The drink of 2020” is vodka in a water bottle when you’re thirsty and expecting water. Yes, we have all had a dumpster fire of a year. I’m just one of millions of people around the world who has had a bad 2020. Here’s the story of my year.
First, we need to back up a bit. In September of 2019, I saw my doctor for a check-up as I do every year around my birthday. I was thrilled when she said I wasn’t due for my pap for another year. There is no quicker way to ruin your day than to have to disrobe from the waist down, throw your feet in the stirrups as she says, “Scoot down, a little more, just a little more,” and then that cold umbrella opens up inside of you. Women, you know what I’m talking about.
She drew blood for my labs. She listened to my lungs and heart. She thumped my knee to test my reflexes. She felt my throat. And then she gave me a breast exam. During the exam, she felt a tiny lump, so tiny I could hardly feel it myself. “What is that?” she asked, as if I knew about it and was testing her. Incredulous I said, “I have no idea.” I don’t get lumps. I just don’t. My roommate in college had breast cancer in her family, so she kept a “How to Do Your Own Breast Exam” pamphlet hanging from our shower head. HER family gets breast cancer. Mine doesn’t.
My doctor felt it a few more times then proclaimed, “It’s nothing to worry about, it’s squidgy.” I had told her for years when she did my breast exams, “No worries, you won’t find anything, I don’t have breast cancer in my family,” a statement she seemed to agree with. So I took this latest info at face value. Nothing to worry about. No need for follow-up, I guess this “squidgy” little lump will go away on its own.
Fast forward a few months, and the lump had quite certainly not gone away on its own, but in fact had grown, to the point where it was impossible not to feel. At this point it was December of 2019, I’d recently changed companies and health insurance, and was just getting my bearings in both.
At one point in January, I made an appointment with my new health care providers, Kaiser, but at that time, my new job was ramping up, and meetings took precedence over a check-up, so I canceled.
And then Covid hit in March.
I told myself, “I’ll make an appointment when Covid’s gone” thinking Covid was going to be a blip, and we’d be back to normal within weeks. We all know how that turned out. With Kent’s persuasion, I bullied my way into a video appointment in May.
The nurse practitioner I met with was very nice. She asked how long I’d felt the lump, where it was, even asked me to take off my top (on video, mind you), so that she could look for it herself. That’s the funny thing about lumps, they’re not the kind of thing you can diagnose over zoom. I don’t know what she was expecting to see, but she didn’t seem to believe me. “Well, maybe it’s just “lumpiness,” not *A* lump,” she said. “How about if we have you come in for an exam in June?” It was the end of a long work day, and it was a warm and glorious San Francisco day, and I truthfully just wanted to put my top on and go outside. So I said fine and hung up that video call as quickly as I could.
When I was finally seen in the office by the same nurse practitioner in early July, she felt my breast and after I heard her catch her breath she said, “Oh my, yes, I do feel what you were talking about.” She then ran the ultrasound wand over the lump, displaying the big black blob that covered the screen. After taking copious measurements of the lump with her mouse, she hustled. She called mammography and biopsy and requested a last-minute appointment on a Friday, which of course, promptly freaked me out. This was the same woman who had pushed me off a month. Nothing was available that afternoon, so I was asked to come back the following Monday.
Covid makes in-person doctor’s appointments inconvenient. You have to go alone, and after waiting in line to just get into the building, you get grilled about your symptoms if any, and they take your temperature. And there are only certain places where you can wait for your appointment, which of course never starts on time. It’s all a lot, but I get it, protecting health care workers when there’s a deadly virus out there is essential.
I had the first mammogram appointment of the day. No matter what size breasts you have, mammograms are hell. They are barbaric machines that pinch your skin, require you to not move a muscle even though you’re in an extremely tight and uncomfortable position, all while feeling like you can’t breathe. And when they’re trying to capture a good photo of a lump, you have to put up with the abuse even longer.
You know when someone’s trying to make you feel better, and it only makes you feel worse because you can see right through what they’re doing? That’s how I felt during that mammogram. She kept trying so hard to reassure me that “I was going to be ok” that I started getting angry, and wanted to scream “OF COURSE I WILL BE OK, THIS WILL TURN OUT TO BE NOTHING AND THEN YOU’LL BE SORRY!”
After the mammogram, they rushed me next door to the ultrasound/biopsy room, pushing a scheduled appointment out of the way. If a mammogram is hell, a biopsy is whatever is worse than that. They lay you down in a dark room, and in order to grab a bit of that lump inside you, they have to do what feels like inject you slowly with a sharp needle, then snap another metal device down quickly on your skin in order to pull it out of you. It hurt like hell. The biopsy attendant kept rubbing my hand saying, “Treatments are so good these days, you’ll be running marathons and wearing pink like all the other warriors.” I looked at her like she was crazy. This is a cyst, lady, or at the very most, a benign tumor.
The very next evening, on July 6th, whilst out with friends at a parklet dinner, I missed a call from the Kaiser general phone number. Only about thirty-six hours had passed since my biopsy, and as it was after work hours, I called back immediately. Thea, the breast care navigator I spoke with was very kind and compassionate. She prefaced her news by asking if I was with anyone. I said I was with friends. She then said, “This isn’t going to be easy to hear, but you have breast cancer, you have what’s called Invasive Ductal Carcinoma.”
As much as I had denied the existence of breast cancer in my body up to and through the biopsy, I had somehow mentally prepared myself in the thirty-six hours since because the news didn’t come as a shock. She then went on to talk about it in more detail, “Grade 1 tumor, Estrogen and Progesterone positive, HER2 negative” which truthfully was all just a bunch of gibberish at this point. She said she’d send me an email detailing all of this information with next steps, and to “go back to my friends and enjoy my evening.” Hilarious. “Hey guys, I have cancer, should we get dessert?”
You don’t get to have a guest with you at most doctor visits during Covid, but when you’re meeting with your team of cancer specialists, you’re allowed to bring someone who can be the rational note-taker and question-asker while you’re mentally processing what is going to happen to your body. That day, Kent and I met with the surgeon, the plastic surgeon, the radiation therapist, and the oncologist, one right after the other. They wanted me to speak with the geneticist at the end of the day, but I was too worn out. Truthfully I half listened to the radiation therapist and the oncologist. At this point, all I knew was that I had a cancerous tumor about three centimeters in size in my left breast. I needed to make a few decisions: Was I going to have a lumpectomy or a mastectomy, and did I want to harvest lymph nodes first to see if the cancer had spread before making my decision? How was I supposed to know what to do? It’s not like I prepared for this. The best thing I did that day was ask, “What would you do?”
My breasts aren’t the largest, I run a bit on the small side in my 34B bra. Inside of this size of breast, a three centimeter-sized tumor pretty much fills the space. When we discussed lumpectomy vs. mastectomy, my surgeon honestly said, “Given your smallish size, there just won’t be much breast left after I get done with the lumpectomy.” That made my decision quite easy. I was going to have a mastectomy, and I was opting for reconstruction. I’m fairly young, forty-six, at this point, and I would like to lead a somewhat normal rest of my life with somewhat normal body parts. I’m not super attached to the breasts that I have, but the idea of not reconstructing the breast never really crossed my mind…that day. A month later during the reconstruction I sang a different tune, but I’m getting ahead of myself.
I wanted more than anything to know if the cancer had spread outside of the breast. I needed to know what my treatment plan was going to look like. I’ve seen people go through chemotherapy, and that was the one treatment I was hoping to avoid. When I asked my surgeon to honestly tell me what she would do, she said that she would opt for a sentinel lymph node surgery where she harvests the lymph nodes closest to the lump, and through this process we can plainly see if the cancer has spread. So that’s what I planned.
I prepared for my first surgery. They said it was going to be a quick one, about an hour and a half from start to finish, I’ll be under, but just barely, and I’ll only have a tiny scar in my left armpit to show from it. Covid turned out to work in my favor because on July 20, a mere fourteen days after my initial diagnosis, Kent dropped me off out front at the Kaiser on Geary for surgery.
I’d never had surgery before, but it turned out to be easy. I got pricked and hooked up to this and that, and wheeled blind down a long hallway to a bright room. I heard Dr. Linehan say my name and my medical record number, and the next thing I knew I was in the recovery room. I even walked myself out of the hospital that day.
She harvested three lymph nodes and said she’d have the results in time for my post-op three days later. Those three days were nerve-wracking. Basically those results were going to let me know whether I was going to lose my hair through chemo, lose a breast, lose a lump, have to undergo radiation, or any combination of the above.
I sat in the exam room for what felt like hours waiting for Dr. Linehan to arrive. When she finally did, thirty minutes late, she was out of breath, and panting. “So sorry I’m late, I was just meeting with Dr. Patel and Dr. Nelson [radiation therapist and oncologist] about your results. We found a speck.” Oh no, I thought. Before I could panic, Dr. Linehan assured me, “That’s it, just a speck, your lymph nodes were doing what they were supposed to do, and they stopped the cancer from spreading. This is GREAT news.” Emotional rollercoaster. “So now you have to make a decision, lumpectomy or mastectomy?” I looked at her quizzically and said, “But because of the size of the tumor vs the size of my breast, we agreed on mastectomy, right?” Dr. Linehan agreed.
A mastectomy with reconstruction is a major surgery. You have not one surgeon, but two, and they work in a sort of assembly line fashion. The surgeon removes the breast, and the plastic surgeon immediately starts the reconstruction process. Overall, the process lasts about six hours. After my first surgery went so easily and well, I wasn’t prepared for just how difficult this surgery and subsequent recovery would be.
When I woke up in the recovery room, my throat was sore from the breathing tube, my mouth was cut up and dried out, and my lips were chapped. I was so out of it having been under for so long, that my memory of the day is fuzzy. Somehow I got myself dressed, I don’t really remember all that much. I do remember getting into Kent’s car and bawling, not really knowing why, but I felt worn out and loopy, and it felt like the thing to do at the time.
It’s very hard to explain exactly how reconstruction feels. Here’s my best shot at it: Your breast is gone, and under the skin, which looks bruised and battered and flat as a pre-pubescent child, you have a silicone tissue expander, which essentially feels like a piece of metal pressing down on your ribs. And to top it all off you have a drain coming out of your armpit that you have to empty every time it fills up with your fluids. And this drain will be attached to you for weeks.
When you first get out of surgery, the tissue expander is basically sitting on your ribs, and when the sedation wears off it becomes horribly painful, and the pressure is great. I recall telling people that I felt like I got hit by a truck. Getting out of bed takes a lot of motivation and time. I would lay there convincing myself to get out of bed for so long before I’d actually do it. And then I’d cry, because it felt like I was getting out of bed whilst being pushed down by an elephant sitting on my chest. Gravity was not on my side. So many times those first few weeks, I regretted the decision to reconstruct the breast. When I’d cry from the pain and pressure of the tissue expander, I’d berate myself and say, “If I had to do it over again, there’s no way I’d reconstruct.”
I have my small breasts to thank for choosing to do the mastectomy over the lumpectomy, and I’m so lucky I did. After the mastectomy, they ran pathology on the breast, and there was cancer in the tumor as expected, but also cancer scattered throughout my breast, which didn’t show up on the ultrasound. Had I just had a lumpectomy, we would have been in a very bad situation.
After a few weeks of pain, healing, and constant draining of the tube, you see your plastic surgeon for your first injection. She had assured me that the pain was greatly reduced once she started injecting me with saline, something about taking the pressure off your ribs. So, she started injecting. About seventy-five cc’s later, I had the beginning of an actual breast again, not a piece of skin where the breast used to be. It was so strange to watch my breast become a breast right before my eyes. And she was right, the pain was very much lessened, and the pressure reduced. Every week for the next month, I saw my plastic surgeon for another injection, then after the last, we were to wait three months for the scar tissue to completely heal. The final reconstruction surgery was scheduled for November 6th.
By my third surgery in five months, I was a pro. I joked with my surgeon and anesthesiologist before the surgery, and wore appropriate clothing that was easy to put on after. I was in surgery by 7:30am, and out and recovering by 10:30. I was home in time to get tacos from the taco truck for lunch.
During this surgery, they removed the tissue expander and inserted the silicone implant. In addition to that, they also gave me a breast lift on my right breast to make the two more symmetrical, and they removed fat from my stomach to insert into my reconstructed breast to make it look less “shelfy” and more natural. It was a relative breeze, as surgeries go. The recovery hasn’t been all that hard, the most painful part was the liposuction, and having to wear compression garments. Overall, though, it blew the mastectomy surgery and recovery out of the water. Five days later, I was back at work with minimal pain.
Now, for the foreseeable future, I am one of the millions of women who has to take a daily dose of Tamoxifen. Tamoxifen is a selective estrogen receptor modulator (SERM) that is meant to block the cancer from recurring as it has attached to the hormones that my body is still producing since I’m pre-menopausal. The side-effects of Tamoxifen for some people are wide-ranging and debilitating, from hot flashes, joint pain, and night sweats, to confusion, thinning hair, and irritability. A friend relayed a story about a Tamoxifen-taking family member who got in her car and ended up in Nevada, having no idea how she’d gotten there. Scary. There are countless support groups for folks experiencing Tamoxifen side-effects. Luckily for me, the side-effects are minimal, and I can handle them. Tamoxifen gives me a more than 50% chance of blocking the cancer from recurring. I’ll take it. Next on my journey is a six month checkup in March, then checkups every six months for two years, at which time I will “graduate” and they will consider me cancer-free.
It’s cliche, but through this process, I’ve learned a lot. I’ve learned the language of breast cancer. I learned that my pain threshold is fairly high, but that I do get frustrated and upset when my body doesn’t perform the way I want it to. And I’ve become obsessed with breasts, and realize how much I took mine for granted when they were healthy. When I pass a woman on the street, I’ll check to see if, like me, one of her breasts is fake. Does one jiggle and the other stay in place? Tell-tale sign. And my left breast is completely numb. I won’t ever get feeling back in it, but it’s better than the alternative.
I have not written this to elicit pity nor sympathy. Believe me, my cancer experience has been far easier than most people’s. Folks tell me, “You don’t look like you have cancer,” which I take as a compliment. I joke about it frequently, “If you have to get cancer, get the kind of cancer I got.” I haven’t had to undergo chemotherapy or radiation, but I did lose a breast in the process, and that saddens me a bit. Walking around without a bra on makes me feel like I have a giant heavy boulder on one side of my chest, and I feel a bit off-balance. I guess I’ll get used to it.
I have written this for two reasons. The first: I’m already forgetting how things went down, and I don’t want to forget. And the second reason is that I don’t mind if people know, but I don’t want to have to say it. For me, telling people the news always comes across in one of two ways: I make it sound so dramatic that folks end up thinking I’m dying, or I come across so light that I end up telling a bad boob joke. If you didn’t know before now and feel slighted by that fact, believe me, I wanted to tell you.
For years I thought I wouldn’t get breast cancer because it doesn’t run in my family, I don’t have the BRCA gene, etc. But a shocking 80% of breast cancer cases are non-familial, and just a random stroke of bad luck. 1 in 8 of us will be diagnosed with breast cancer at some point in our lives. When I asked my doctor how on earth I got breast cancer when I eat right and exercise, take my vitamins, and do all I can do to stay out of the healthcare system, her response was, “Imagine millions of cells reproducing in your body all the time. Sometimes, they just get it wrong.”
Do yourself a favor and get checked out, don’t put it off, pandemic be damned. If you have dense breasts, like I do, request the better mammogram. Luckily for me my tumor was “lazy” and slow-growing, but had I done something about it even earlier, I may have been able to save the breast.
It’s been a rough year, for sure, but there have been some major highs along with the lows. This year, I’m working for a company that I truly love, in a job I adore, bringing in a steady paycheck in the midst of a pandemic. We adopted Lola, our quarantine puppy, back in April and she’s been an absolute snuggly joy. She’s gotten me out of bed on days I thought I couldn’t. Kent’s venture fund is booming, his podcast is more popular than ever, and he’s busy and successful. My family is well and my nephew and his wife are expecting a miracle baby. Nobody close to me has been afflicted with Covid, and a vaccine is making its way around our population. And after four years, we have finally found an end to the nightmare that was the Trump presidency.
There are many silver linings to an otherwise difficult year, and I’m choosing to see those as we close out 2020. Here’s hoping 2021 brings with it all the health, happiness, and puppy snuggles we all so deserve.