Tom Petty sang it best: The waiting is the hardest part.
I’m a pretty patient person, generally speaking. I once spent ten hours perched high up in a Douglas Fir tree for a college assignment; I spent the night on a mountain bike trail in Downieville without water; I waited nine years to marry my husband Ron. I know I have no control over time, or other’s schedules, and am happy to let life’s timeline unfold at its own pace. We all grow more adapted to being patient as life throws unexpected challenges at us over the years, more accepting of that which we cannot control.
Some things test your patience more than others, though. Cancer is one of those things.
It’s been over a month since my life changed forever. At thirty-nine years old, I was diagnosed with breast cancer. That initial coping period was quite intense, but it quickly showed me how crucial patience would be throughout this whole process. It also reminded me how quickly human beings adapt: we accept the news, we feel all kinds of emotions about it, and then we move ahead as best we can.
Waiting for my surgery date, for example, was a test of patience. I did not know when my big day would be, only that it was super important, and intimidating. I let my breast care coordinator know I was ready to schedule my appointment, and was told I would be contacted by the scheduler for my appointment sometime during the week. I went about my life as best I could. The weather was nice, so I rode my bike everyday, went to the beach for sunset, and enjoyed that time with my husband. I was okay with waiting a few more days for surgery, until Saturday evening 2/22, when I suddenly felt anxious knowing I had this tumor in me with no end in sight, no scheduled surgery date on the calendar. I sent a message to my doctors to make myself feel better, reiterating that I was getting a little bit antsy to get in for surgery. I’ve never experienced such anxiety before, but my good old bike proved therapeutic once again. The minute my two wheels rotated, I felt immediate relief. Nature is powerful medicine, and so is mountain biking.
A few days later, on Tuesday, I was contacted by the scheduler; she wanted to know how much notice I needed, and could I be ready tomorrow, even. I said yes, and she said she’d call me back later that day. About an hour later, she called back and said I was scheduled for the next day.
I’d read books, blogs, and articles; I’d watched other women’s YouTube videos about mastectomies, and looked at pictures online. I felt as ready as I could be for the surgery. In fact, I was oddly looking forward to it. I was getting on the path to treatment, and was ready to board that train. I’d had enough time to become inured to my new reality, and the gravity of what lay ahead. Two books in particular really helped me prepare: Dr. Susan Love’s Breast Book, and Anticancer: A New Way of Life, by David Servan-Schreiber. Thank you to my older sister Bonnie for the Susan Love book, and my Auntie Christie for Anticancer. Both books were instrumental in helping me prepare, and I learned so much from them.
The eve of any sort of big event usually evokes strong emotions and poignance; the day before you get a double-mastectomy evokes an unusual sense of meaning. This was my last day with my breasts. I went for my last ride with my real breasts, the boobs I’d known since adolescence. Ron and I had a great day together, an excellent dinner at our favorite restaurant in Santa Cruz, Chocolate, and finished off the evening with a magnificent hot tub. I felt as ready as I could be.
I awoke the next morning on Wednesday, February 26 – Ash Wednesday, coincidentally. I’m not religious, but I did find the timing amusing. Ron and I left the house at 5:15 a.m. for Kaiser San Jose. We got checked in, and within minutes I was led back to the pre-operating room. I changed into my gown, and laid down on a rather comfortable hospital bed, complete with a hot-air fan that warmed me up like a fireplace. I felt cozy; I was also tired, having stayed up until 2 a.m. the night before.
The three surgeons came in to see me before surgery, which was comforting. Though I’d met them before, there was something calming about seeing them before being in the operating room. The anesthesiologist checked in with me, too, and the nurses were caring and attentive. I felt like I was in good hands.
By about 7 a.m. I was wheeled into the operating room, which was freezing cold. I understand why, but it was such a change from my hot-air blanket in the pre-op room! The surgeons and nurses began doing their security checks, as the anesthesiologist explained to me, which is where they state who they are, who the patient is, and exactly what they will be doing. Of course, this has been reviewed many times before surgery, but it’s the final clearance; the final check of the airplane before take-off, so to speak. As I lay there listening to my surgeon take her turn, stating her name, my name, and that she would be performing a bilateral mastectomy, the anesthesiologist gently said:
I’m going to give you something to send you off to Hawaii now, okay?
Within seconds, I was out.
The next thing I remember, I was in the recovery room. I scanned the room and knew I was out of the OR; surgery was done. The anesthesia? Not so much. I was really sedated, and quickly fell back asleep for awhile. The nurses checked on me a few times, and said I would be able to go home that day. The doctors had told me I’d be spending at least one night in the hospital, so this was music to my ears. I got to go home and sleep in my own bed, see my cat Beau, and be in the comfort of my own home – and avoid Coronavirus exposure at the hospital, perhaps. This was a great way to wake up from surgery!
Next, I awoke to a beautiful sound – Ron softly crying, sitting next to me, his hand on my forearm since the IV was in the back of my hand. He said he was so happy to see me; that surgery was over, and everything went well. I’d been under about five hours. I lay there another forty-five minutes or so, sleeping peacefully, before I asked to get up and use the restroom.
They had warned me my urine would be blue from the dye they injected. The plastic surgeon who specializes in this technique explained it would help him trace the lymphatic fluid after they removed my lymph nodes, possibly divert that flow, and may reduce my odds of developing lymphedema after surgery. Lymphedema is a life-long condition involving swelling, heaviness, and tingling; once you get it, you’ll have to manage its symptoms for life. There are many stretches I learned in the lymphedema clinic I went to before surgery, but with my axillary lymph nodes removed on my left armpit, my risk of developing it increases.
I peed blue, as expected, but what shocked me next was my body temperature. I was feverishly hot all of the sudden – sweaty, feeling as if I were in a sauna. Exiting the restroom, I told the nurse, who promptly sat me in a wheelchair. That hot-air fan used to warm me up before surgery was now directed at my face, but switched to air-conditioning. It felt amazing. She put an ice-pack on my head and back of my neck, and within a few minutes I was cooling off. I guess it’s a precursor to the hot flashes I’ll likely develop from Tamoxifen, which I’ll have to take for at least five years after chemotherapy.
Ron’s father, Ron Sr., and his wife Cindy came up to the hospital to see me, which was really nice of them. Ron drove me back home, and I pretty much slept the rest of the day, waking up for a short dinner before returning to bed.
The next morning, I felt hungover from the anesthesia. I threw up, which was awful. I felt terrible – headache, nauseous, sore, and like my chest was going to explode. I had immediate reconstruction with expanders put in, and they were certainly doing their intended purpose, stretching me out like a balloon. The reward for that was keeping my nipples, which made me cry. I didn’t realize just how much they meant to me until I saw they were still there. The plastic surgeon had explained that they weren’t sure they could save them, but hallelujah, they were still there. I felt more like myself; I still looked like myself, sort of. The expanders were filled with air, so I even looked like I had boobs, or foobs, even though they were awkward-looking and had clearly been through the ringer. While I knew they were no longer my real breasts, it definitely helped with the transition to see something there when I looked down! The nipples were the icing on the cake, even though they could still have to be removed down the road.
The drains take some getting used to, though. One on each side, a plastic tube drains fluid into a silicone bulb that you must empty and clean daily. You can’t take a full shower or get your bandages wet at all. You have to milk them to clear clogs. I had read about them and how annoying they were; how women couldn’t wait for the day they got them out. Looking down on these new drains attached to my body, I realized I would be in a sort of Body Jail for the bulk of the next two weeks, tied to them like a leash. I could be bummed about it, grossed out, and claustrophobic that these things were married to me day and night. Or, I could distract myself by focusing outward on the amazing world going on all around me. Though I knew I had a long journey ahead, I resolved that I would keep myself busy so as not to focus on the drains too much.
First, I had to get over the anesthesia. I spent the day mostly sleeping and fighting nausea; Ron’s dad and Cindy came over for a short visit after picking up my post-mastectomy camisoles from Nordstrom in San Jose. Family is so awesome! I wasn’t in too much pain; I just felt hungover. There was persistent tightness and pressure in my chest, though.
The second day after surgery, Friday, February 28, I woke up early. I was charged and ready to go; lying around for two days straight had me feeling over-rested. My dad came down to visit me, and I decided I needed to go outside for a walk. We walked up the lane behind my house, a quiet street lined with redwood trees, and a slope that stretches the calves like a gravity-stretch. We were rewarded with an expansive mountain view at the top, and it felt so good to be moving again. My breasts were gone, but my two feet were still propelling me forward; my body was still working! I felt inspired.
I had a great day with my dad, and then my wonderful mom came down to cook me dinner. She stayed the night and brought a whole bunch of goodies with her. While there may be many people who nurture us in life, there is simply nothing quite like the tender loving care of your parents. I am so grateful for the love of family and friends right now.
That weekend, I increased my walking each day. I went for a magical hike in the redwood forest by my house in the Santa Cruz Mountains; I relished the warm sunshine of a nascent Spring, enjoying the early bursts of wildflowers that blanketed the hillside. It was beautiful outside, and my surgery hadn’t changed that.
I’ve always looked to nature for an escape, a playground, a quasi-church, as therapy. It is so healing to be outside, whether in my garden, or on a trail. Knowing I was limited in what I could do, I committed to hiking as much as I could each day. I kept my lymphedema exercises and stretches going, too; I elevated my left arm after long walks. I did light yoga, and plenty of namaste, a perfect pose for my arms right now. I didn’t want to push myself too hard, but I also knew exercise was good for me. I’ve spent my life exercising pretty much daily, so sitting around inside wasn’t going to do it for me, although I surely enjoyed my evenings relaxing with a good book, or a good TV show for levity. I needed to go outside, whether reading a book on the chaise-lounge in my garden, or walking on the trail.
Each day felt a little bit easier. The more I did, the less I dwelled on the situation; the more inspired I got, really. The world goes on with or without me, and it was comforting to have so many different things to focus on besides myself. Yes, the drains were a pain, but my camisole had little pockets for them, and once I was hiking, I didn’t notice them. I put on make-up; I washed my hair over the kitchen sink. I took showers with a detachable showerhead, careful not to get my chest wet, and sponge bathed my armpits, which was super strange; my left armpit is still pretty numb, so I can’t really feel how hard I’m scrubbing with the cloth. I also had to avoid getting my gauze wet.
I took the Gabapentin (Neurontin) once a day for seven days, as directed, and took one Norco each evening for the first five nights. I must say, they really helped with the pain. Although I was uncomfortable, I wasn’t in extreme pain, and felt better not taking them. The next night after stopping the Gabapentin, however, I had my worst bout of insomnia – up until sunrise, just could not sleep. I looked up withdrawal symptoms from Gabapentin and Norco, and sure enough, insomnia was one of them. I had no other conclusion to draw except I was having mild withdrawal symptoms; just one pill a day for several days, and it was enough to trigger that response. I never wanted to feel like that again, and decided I was done with those pills, regardless of the pain.
The next evening I slept normally, which was a relief, but the stabbing pain began. I’d heard about this nerve pain before, but it shocked the heck out of me when it first happened. It literally felt like someone was stabbing me in the chest with a knife repeatedly, for several seconds; then, it would just stop. Next, a burning branding pain would ensue, followed by a tingling, electric shock feeling. It was pretty intense, about a seven on a pain scale. I consider myself pretty strong and have a good pain tolerance, but this was a bit much. It happened several times throughout the day for a couple of days before subsiding; it’s only happened a couple of days since, and none the last couple of days. I’ve read it can last for weeks, months, or years, so we’ll just have to see how my body responds. At least I know what to expect now.
During this entire process, I’ve been reminded of the old adage, We fear what we don’t know. Everything that has felt scary has been something I needed to learn more about, just like this nerve pain. I’m adapting, patiently, to my new reality on a daily basis.
I have a positive attitude by nature, but that doesn’t mean recovery has been easy. It sucks, yes; I have breast cancer. Radiation and chemotherapy lie ahead. The will to carry on, however, supersedes self-pity. We are resilient beings, and everyday I am reminded of this.
I continued each day after surgery trying to stay as busy as I could. The less I thought about my situation, and the more I dove whole-heartedly into life around me, the better I felt. I read, I watched women’s videoblogs who’d gone through breast cancer, and kept my daily newspaper and crossword puzzle habit going. I had some amazing conversations. I relished beautiful sunsets over the ocean that made me so grateful to live where I live.
I saw a bobcat sleeping right next to a hiking trail; I saw snakes, newts, and birds-a-plenty. I’ve always been a naturalist, and have honed my observation skills over the years through experience, but lately I’ve been a real animal whisperer. I had to walk slowly in the beginning, before graduating to my standard power-walk (I’m known for walking really fast!). There is an art to wildlife observation, and I’ve built it over the years; I’m still growing. These post-mastectomy hikes have presented a great opportunity to see more wildlife I probably wouldn’t have seen were I flying downhill on my bike – something I miss dearly.
I’m used to riding my bike almost everyday, and I cannot wait to feel the flow of two wheels under me again. This has been the longest break since my last concussion years ago. I got on my bike twelve days out from surgery, just to see what sitting on it would feel like. Just the pressure on my wrists and forearms was enough to feel uncomfortable. I couldn’t believe how something as seemingly small as holding the handlebars was. I’d never thought too much about my arms; just hold the bars and off you go. I realize it will be at least a couple of more weeks before I’ll be on my bike again – and that’s optimistic. It will be a test of patience staying off of my bike, but my body needs to heal first.
I am human, however, and there are times I’ve felt claustrophobic from having these drains attached to me; I just want my normal body back. I will get them out this Friday, March 13, five years to the date that I received title and keys for our first home in Ben Lomond. Ron and I also got engaged on a Friday the thirteenth, February 13, 2015. I’m not superstitious, but it’s an auspicious date.
Thirteen days out from surgery was one of my harder days of recovery. I had gone in on day twelve, Monday, for my appointment; I thought I’d be getting them out. My surgeon went over my updated pathology report with me, which noted a 44mm tumor, a few fibroadenomas, including the two I’d already known about for years, and extremely dense breast tissue. My Nottingham Histologic score went up to a 9/9, the worst grade.
And I wasn’t getting my drains out. My doctor was worried about infection from early removal, and proceeded to elucidate what she’d seen over the years. They used to take them out earlier, but this correlated with an increase of infections at the drainage site, which sometimes spread to the breast cavity, ultimately necessitating the removal of expanders and implants. I trusted her experience, of course, but I was disappointed to not get them out. I did get my bandages and tape off, though, which was a welcome relief. My sister came with me to the appointment and spent a couple of nights hanging out with me, which helped ease my deflated hopes (there’s a lot of puns I could run with here!). Bonus? I could finally take a full shower, which felt heavenly. I set the drains on my shower rack, and enjoyed the sweet relief of hot water flowing down my entire body. Hot water always feels wonderful, but this was exceptional. I shaved my armpits as best as I could, which felt so weird because my left one is almost entirely numb still. After almost two weeks without a full shower, I was so grateful.
I spent the next few days hiking and going to the beach for sunset, and saw one of the most spectacular sunsets I’ve seen in months. It inspired me to keep the big picture in mind, to keep my eye on the horizon. The world goes on with or without me, we all die someday, and it’s all okay. Do I want to die now? Of course not, but it’s possible. It’s surprising how quickly your mind adapts to that new reality. Granted, it didn’t come easily, but I do feel more at peace with the prospect of death than I did before this cancer diagnosis, hands down.
I feel more patient, although I have a lot more growth to do, surely. Once chemotherapy starts, that will elicit a new sort of patience. I am amazed at how natural it is for patience to evolve in the face of adversity. Yes, I think attitude has a lot to do with it, but we’re innately hardwired to do so already. Once you choose it consciously, the pieces fall into place. Sometimes, you have no choice in the matter; it’s a matter of taking care of yourself – survival, almost – of living in a place of anxiety and fear, or living in a place of peace and openness. When I was first diagnosed, I’ll never forget what a friend and colleague said to me at work. She explained that her friend had gone through breast cancer, too; what helped her most, she said, was learning to control her mind. It made perfect sense when she said it; I was in that shell-shocked, terrified first few days after diagnosis, and my mind was cycling through all kinds of sad scenarios. Riding my bike was major therapy during that time, luckily, but it wasn’t enough to eschew my fears altogether. Her advice was timely, and appreciated; I took it to heart. I’ve meditated many times before, and consider forest bathing and time outside in nature to be a meditation, of sorts. There are many shades of meditation, but her words – control your mind – really resonated with me. It’s become one of my mantras throughout this whole process. Thank you, Elizabeth, for this gem of wisdom.
Today is Thursday, March 12, 2020, and I’m on Day 15 with the drains. Tomorrow, I’ll get them out. I’ll also meet with my oncologist to go over the plan for chemotherapy and possible radiation. I can’t wait to wear a normal camisole without the drain pockets; to put on a cute outfit again. I want to exercise more than just a brisk walk and yoga. I miss riding my bike so much it makes me cry. I miss the endorphin rush of intense cardiovascular activity that I’ve become so accustomed to over the years. I miss feeling like my full self, and I’m only at the start.
I worry I will never get back to my full self. I worry that I’ll never ride like I used to. I worry that I won’t be the wife I was. I worry that I will die young, which always seems to make sense to me for some reason. I’ve lived my life pretty enthusiastically, keenly aware of its brevity and sanctity, living by the old cliches of Carpe diem and Live like you might die tomorrow. I have a fire lit under me most of the time to get after it, whatever it is. I know I can still grow more grateful, more passionate for life, but I feel like I’ve already been living like that for a long time. Was this vigor and lust for life enough to keep me from getting cancer? No.
Finding out you might die soon makes everything come into clear focus – that which you are happy for, and, on the contrary, that which bothers you. That includes everything from environmental problems to unsolicited medical advice. Cliches that oversimplify the situation don’t help. At the end of the day, I appreciate any and all positivity, and am grateful for anyone who authentically cares about me. My sensitivity is heightened, though, and I find myself having a shorter temper than usual. It makes a casual comment, like, Your cancer isn’t that bad; you’re going to be fine, meant with good intention, surely, sting a bit. No, the cancer is pretty bad, and no, I don’t know that I’m going to be fine; I don’t know that it won’t come back to kill me. There’s the Someone I know had it way worse than you story, intended to make you feel better, but it just makes you feel guilty for feeling sad about your situation. If someone else went through something so much harder, then surely my experience can’t be so bad, right? No; of course not, but it can evoke such thoughts.
I’ve been reading like crazy, and I listen to what doctors are saying; what years of clinical trials and research have proven. I’ve pretty much already been eating the healthy diet they recommend for years; no, I’m not perfect, but I can honestly say I’ve eaten well in my life – pescatarian for twelve years, no alcohol for seven, I drink a lot of water everyday. Did it count? Did it protect me? Apparently not. I am always open to improving, learning, and growing, but when it comes to medical advice, I’ll listen to the experts. I am not opposed to advice, but I don’t like being pressured into something that doesn’t work for me. I will try something on, but if it doesn’t fit, I’m not wearing it. I don’t like being told what I should do or not do, especially when it comes to cancer. I don’t need to hear what I should be eating, what I should be doing, or how I should be feeling. My friend Tracey and I once joked that we hate when people should on us. Don’t should on me! we laughed. Just do you.
Arrogance is one of my biggest pet peeves – that, and lack of awareness. I don’t appreciate it when someone acts like they know it all and aren’t even paying full attention; they don’t see the writing on the wall. Sometimes, I want to say, Humble down. Take a humble pill. When I say people, I’m not implying specific people; rather, a general form of the word, from people on the comments section on blogs and social media, to a few people in my own life, too. I’m a pretty open and honest communicator, and will tell someone as directly yet gently as I can if I’m feeling unsettled about something. Again, I mean people in the general sense of the word, so please don’t read too much into it if you know me personally; trust me, I would tell you if something bothered me.
We are never done learning; there is always something more to learn, more depth to explore, more questions to ask. While I’ve read a few informative books and a myriad of articles online, I wouldn’t pretend to speak of cancer with any degree of expertise. Arrogance is the last thing I need here. I am very much a student in all of this, trying to stay as open to the experience as I can so as to saturate myself with the essence of this disease, only to squeeze myself dry of it like a desiccated sponge should I make it out alive. I don’t joke when I say make it out alive; I really don’t have full faith or evidence that I will. That’s why I am more sensitive to what others say right now. Forgive me while I vent; this is part of the process of anger. Like I said, everything is magnified right now, and I can’t help but notice. I feel like a wounded animal. I just want to curl up alone and hide; to lick my wounds in solitude. Bless anyone who tries to help. However, there are times in life where it’s best to admit you don’t have all the answers, you’re not an expert on breast cancer, and just listen; that goes for myself, too.
Lately, I find myself wanting more of that – listening. The patient, I’m just going to sit with you and listen while you talk kind of help. My family has done a stoic job of this, from the early days of diagnosis, to the early days of post-surgery recovery. I’ve had some incredibly inspiring conversations with them that have buoyed my spirits in that way only family can. Talking and messaging with friends has been really comforting as well, and every card I’ve received in the mail has warmed my heart.
My husband has been a professional-grade therapist, letting me jump from happy to serious without missing a beat. He’s ridden the roller coaster of emotions with me, cried with me, laughed with me to ease my nerves. He knows there’s nothing he can say to fix the situation, and he has grown to be an even deeper listener. He sits with me and empathizes, but doesn’t offer platitudes, or oversimplify my struggle with an order to just keep my head up.
He listens like my paternal grandmother, Sheila Prentice Craig, did. She passed away last year, and her absence left a hole in our family that no one can fill quite like her. Sheila was one of the best listeners in our family; she was one of the few people from an early age who really just seemed to lean in to others when they talked. She gave her full attention; she reacted honestly and genuinely, leading a graceful dance of a conversation that would bounce from topic to topic. I would talk with her about everything, from our shared love of birds, to our shared love of the environment. I felt like she saw me for who I was.
I’ve been really wanting to talk to her lately about all of this. I told Ron the other day, and he asked me what she would say to comfort me. I paused, and replied:
Nothing. She wouldn’t say anything in particular; she would just listen and look at me in a way that I knew she understood me. She wouldn’t judge me or try to fix me. She would sit with me and hold my hand, but offer no sympathy; she didn’t care for that. Just pure, true empathy.
I miss her so much, but I realize how much she taught me about compassion, about being a good listener; about not being self-centered. We had a lot in common, and I’ve been told I’m a really good listener myself. I especially appreciate a good, patient listener these days. Patience: a golden virtue.
Patience is adaptive; it is constantly responding to life in ways we aren’t even aware of. When we think we can’t handle it, or can’t wait any longer, we prove ourselves wrong by persevering. When we’re overwhelmed, patience sits with us until we’re out of the woods. When we’re waiting to get surgical drains out so we can take a nice, hot shower, patience is paramount. I am amazed not at myself, but by how our minds are so well-adapted to adapting – we are meant to grow accustomed to life’s changes. Natural selection has shaped us for these challenges, and I am really feeling the effects of its power right now. It’s in my genes to get used to this.
I’ve also been reminded of how important it is to not judge ourselves, or others. I have to forgive myself when I get angry, when I feel despondent, and I have to allow myself to laugh and feel happy without feeling like I’m lessening the severity of the situation. Though one in eight women will get breast cancer in the United States, people deal with it in different ways; there is no right or wrong. I read so many people’s stories before surgery, and was in awe of the variety of stories; it helped me so much, and motivated me to share my story, too. Everyone’s journey is unique to them. What works for one woman may not work well for another, and that includes pain medication. I don’t judge anyone who takes pain medication, let alone after a major surgery, and I also don’t judge those who didn’t take any pain medication. To each their own. I hope that anyone who reads this understands this is merely my experience, and I don’t presume to speak for anyone else.
I surprisingly enjoyed some of this down-time. I am on a leave-of-absence from work, so each day has presented me with the gift of time. While I’d rather be on a real vacation, it’s still nice to have this time off, especially now. I’m a positive person by nature, but healing hasn’t been a cakewalk, either. What helped me cope most was hiking, being outside, and reading. When I would get sad, I’d try to make a conscious effort to dive into something interesting; to put my energy outward, learn something new, get outside of my own head. The important thing is to listen to my body, and take good care of it; that’s really what matters.
A cancer diagnosis befalls you like a rain-soaked cloud, obstinately sitting on your shoulders, but it doesn’t keep you from seeing the beautiful world that remains in front of you. As long as I’m able, I’ll keep going outside, keep appreciating the natural world, and keep getting outside of myself. I may have this shadow following me around now, but so far, I can still see the rainbows and light in front of me. I realize how much more good there still is in the world, whether or not you are sick, and that will always be the case. Even when I die, the world is still full of more good than bad, more beauty than decay, more love than hate, more humility than arrogance. Life isn’t all rainbows and butterflies, as they say, but they’re out there – and that’s enough for me right now.
Here’s a video I made on March 12, 2020, about my journey so far.