(Well, it's been awhile, right? Welcome back, and thanks for reading! Since I took a much-needed break, this post will be a doozy. You've been warned...)
Breast Cancer (Un)Awareness
A funny thing happened as October (aka Pinktober/Breast Cancer Awareness Month) rolled around again this year, but this time as a SURVIVOR and not a chemo fighter. As much as I had hoped to "take back the month" (as I promised myself) and to not let it get to me that the very thing that tried to kill me was being exploited for marketing purposes, it also coincided with the timing of my final surgery. Just as I had started this website and began to finally get out there as a breast cancer advocate, I had to revert to being a patient again.
Fellow survivors were asking if I could speak to others who were newly diagnosed (which I'm always happy to do and is why I originally started this website), but I found it difficult to take on other people's cancers as I had to re-enter my own. (In addition to not wanting to talk about cancer, I certainly didn't want to write about it!) I was also finally getting back to work, but how do you take on any when you have an unknown surgery and recovery on the horizon? Not to mention that EVERYWHERE I looked, pink ribbons constantly reminded me of having breast cancer as I was finally getting on with life! Sometimes, it would just be nice to not be so aware. Oh yeah...F*&K, I had CANCER.
Where'd Everyone Go?
I recently saw a picture online of Robin Roberts, where she addressed the unexpected isolation of cancer treatment:
One thing that I didn’t fully anticipate was the isolation that I’d feel. I knew I’d be physically isolated. The doctors and nurses wore masks so all I could see were their eyes. And nobody touched me unless they were administering medicine. But the pain and weakness brought me to a place where I felt completely alone...
Cancer not only shows you what you are made of, but it also truly reveals those around you. Having recently relocated to a different coast, my family and friends were not nearby during my diagnosis. "If this had just happened in New York," I thought, "I know there would be people at my door with a cocktail and a shoulder to ugly-cry on." I needed and missed them now more than ever.
When we originally decided to go public with my diagnosis, everyone seemed to rally around ("Let us know ANYTHING you need...we are here!"), and we thought, "YES!! WE CAN DO THIS! We have so much incredible support!" But when it came down to it, and I reached out to people to tell them what I needed, THEY WEREN'T THERE. Sure, I know everyone meant well, and they probably meant it when they said it...but they didn't mean it when it really counted. And that was heartbreaking.
One friend who normally left me random, funny texts and voicemails just...disappeared. I would have LOVED a funny text! Or when I would finally talk to friends, they didn't want to "burden" me with their day. (Since they didn't have cancer, they didn't think their problems were important enough and ultimately, it makes us feel even more alone.) F&@K that -- I'm still your friend! Sometimes, we'd LOVE to not talk about cancer! One friend said, "S--t. I don't know what to say." Fine, just say that! He did...and then he just listened. One friend just sent me funny pictures throughout the day to make me smile. At least they were still there.
Even though these disappearing acts of so-called "friends" were initially sad, as I spoke to others in the community, I found it all too common. Unfortunately, it was something we were all experiencing. The excuses were varied, but the disappointment was the same.
As I look back on chemo, it's such a blur. Everything was so scary and unknown. As I regularly poisoned myself, how did we know it would work? Yes, the tumor seemed to be shrinking, but what would the outcome be? Would the potential long-term effects be worth everything I was putting my body through to kill cancer in the short-term?
Everyone thinks you lose weight during chemo, but you actually GAIN. For starters, they pump you full of steroids before the infusion to help with nausea. Everything tastes like metal, so you just have to eat whatever you can that goes down easily, which is usually bland and not the healthiest. (I ate a lot of bone broth, mashed potatoes, mac & cheese and applesauce.) You're also highly emotional due to the 'roid rage (I'm surprised some family members still talk to me), managing waves of nausea and just trying to make it to your "good week" so you can enjoy it, before you have to go back in to get poisoned all over again.
During this time, I attended support groups. (The one thing I'm always told at appointments is how I'm "too young to get cancer." SURPRISE! Got it anyways!) When I attended breast cancer support groups, I was the only one in there without grey hair. Then, when I went to the young adult group, I was the only one in there with breast cancer. I now found myself in some weird cancer crack.
Well into my chemo phase, one night, during a young adult support group, I met a young mother, recently diagnosed with breast cancer and about to start chemo, with that look in her eye (think deer in headlights), which I recognized. (We all have that look in the beginning.) Convinced I was of no help to anyone until I completely finished treatment, I realized if there was one thing I understood by now, it was chemo. Maybe I could help! Remembering how everyone disappeared on me, I refused to be that friend. So, I approached her afterwards and offered my number and time. That's all I could give, and that's all that she needed. And in helping her navigate the unknown, I found I began helping myself.
On my last day of chemo, a NYC friend happened to be flying back through LA (amazing how the Universe aligns sometimes) and showed up t0 my last round. When I saw him, we hugged, and I cried like a baby. Remember what I said about those MIA friends? What I found is the ones who remained were AMAZING. I then decided to focus on the ones who WERE there -- not the ones who weren't.
As chemo neared an end, I suddenly felt...scared. Chemo was a familiar routine; I had made "chemo buddies," loved my nurses and knew what to expect. (I once called it "comfortable chemo" in a support group, to which they laughed and replied that they had never heard it called that before.) The end of it meant that surgery was coming, along with the loss of my lady parts, and I didn't feel ready. Yes, I knew I had to do it -- "Lose a boob, save a life," blablabla -- but I could still not be happy about it. This s*&t sucked.
I had never been brave enough during chemo to show my bald head. (It also wasn't completely bald. My boyfriend had left me some "sideburns" to show outside of my headscarf, plus short hairs on the top of my head -- "grippers," as my mom called them. I always thought that I resembled a Minion.) During chemo, I could not bear to shave my head and had my boyfriend do it as I closed my eyes and cried. But after chemo, it felt like "chemo hair," and I wanted it GONE. I wanted a clean slate (literally), so I excitingly shaved it myself. Sure, I wouldn't leave the house without it covered, but it felt AMAZING to do; it was finally an empowering moment during such an uncontrollable journey over your own body.
The weekend of my surgery, my mother and another family member came to town to help. We saw the mountains/beach (before I was stuck in bed for awhile) and enjoyed a final meal, even though I could barely taste anything post-chemo. As the surgery drew near, the impending losses hit like a ton of bricks. I would soon have to say goodbye to my womanly parts, and I wasn't ready.
On the day of the surgery, my boyfriend stayed with me in the patient waiting area while my family got comfortable in the waiting room they would have to stay in for the next few hours. (They received a card with my number on it, so they could watch the screen for my updates. "Like at the racetrack!" laughed my boyfriend.) Maybe I was in denial, but I felt amazingly upbeat, given what was about to happen. I remember enjoying the heated gown and new non-skid socks (one silver lining!).
I've always been a hard stick, which is why I had a port put in during chemo. The waiting time was excruciating, and I kept seeing my plastic surgeon, who was waiting on my other surgeon to begin. I wasn't able to eat or drink since midnight, and all I wanted was a glass of water. I couldn't wait to start but then thought it was a good sign that my surgeon was thoroughly taking her time! Finally, the nurses came to administer the IV. I really hate the needles (I still can't look), so I looked away. My boyfriend was sitting at the foot of my bed since the nurses had to be next to me to prep me for surgery. Since he couldn't hold my hand, I felt him grab ahold of my foot as I closed my eyes and cried as the needle went in. S&@T, THIS IS REALLY HAPPENING.
As I said goodbye to everyone, I was doing ok, until it came time to say goodbye to my boyfriend, and then I lost it. I knew that meant I was on my own. I cried as he kissed me goodbye and assured me he would see me when I woke up. Now, all alone, they wheeled me down the long hallway into the cold operating room. Here we go...
That's honestly the last thing I remember. Whatever good stuff they gave me to knock me out really worked! I woke up in pain with my family over me. We all went to my hospital room, and all I wanted was sleep and a glass of water. However, between the pain and the beeping machines, it was tough to really get any rest.
As I laid there, weak, bald and in pain, I finally had a moment to take it all in. Cancer treatment is a long road, and you're just trying to get from one phase to the next to eventually get to the finish line. Ever since I had been diagnosed, it had been gogogogo. I looked over and saw my exhausted boyfriend, curled up on the window seat, in case I needed anything. My family had gone home to clean the house before I arrived. My heart filled with gratitude knowing how lucky I was to have them.
Something happened after that surgery. First, I had drains in, so my arms had to take it easy. Normally, I would NEVER allow myself to be seen bald outside of the house, but suddenly, I didn't care. WOW, did I really just get though that surgery? And I was still here? Let people see me bald! What was I hiding? Right then, I decided to stop covering my head. I was a breast cancer SURVIVOR. Why shouldn't I be proud?
Soon, there was an event I really wanted to attend and hoped my drains would be out by then. Wrong! It wasn't ideal, but that's what cardigans are for! My boyfriend was on Drain Watch, and we made sure I didn't get too close to anyone. At least I was THERE. This was my first bald event...and it felt amazing. There was no going back now. What had I been so scared of?
Later (with my hair now starting to grow again), my surgeons confirmed the path report showed that I officially had N.E.D. (No Evidence of Disease) as I cried tears of joy. SUCK IT, CANCER.
Beam Me Up
After 32 rounds of radiation, this felt like the easiest phase (especially after chemo)! It was every weekday for about ten minutes. That was it? After hours of being stuck in a chemo chair? Yes, please! My radiation therapists always made sure I was comfortable as they bent and contorted me on the table while I got zapped. Every session done meant one closer to the finish line!
(More on radiation fun in a later post...)
Finish Line (Finally!)
After radiation, I finally felt like I could get on with life! Yes, I had a surgery coming, but I finally had energy! By my birthday, my taste buds had come back, and I could actually taste my food. BEST GIFT EVER for this foodie (chemo was rough)! I got back to work, launched this website, and started getting on with it.
My final surgery would be several surgeons to coordinate, and I knew it was happening at some point; I just didn't know when. How do I truly get back to work if I know I will have to stop it all soon? I waited in limbo. A friend went with me to my final port flush, which should have been exciting, but as we were leaving, I wondered why I oddly didn't feel that way. Yes, this meant no more monthly port flushes, but it also meant the TRUE end of my "comfortable chemo." It had become such a routine part of life, I actually felt sad that I would miss it.
As I finally got word of my surgery date (ironically, during another Breast Cancer Awareness Month), a weird convergence of emotions happened as I had to start going back to doctor's appointments. (I hadn't had back-to-back doctor's appointments since pre-chemo, and it was now bringing all of that cancer fun back up -- like PTSD -- that I thought I had finally put to rest.) Even though it was a lesser surgery than the first go-around, it was STILL SURGERY, and I was still worried! I was still being opened up; what if I didn't wake up? Every test produced more "scanxiety," which led to more tests and more worries. How do you get on with life, when you're constantly reminded (especially with pink ribbons everywhere!) that you almost didn't have one?
The Hardest Stage: Post-Treatment
After everything, I visited my oncologist again. Eager to hear my ongoing maintenance plan, I assumed it would involve some sort of scan every trimester that would eventually fizzle into less frequent ones. NOPE. I was surprised to hear there would not be any scans. Huh? Instead, we would do bloodwork every trimester, and oh, btw...she nonchalantly informed me that the type of cancer I had has a high risk of recurrence, usually "within the first two to three years." And if it does come back, it's usually in the: bone, blood, lung, liver...OR BRAIN. The concern now would be "lingering" symptoms that would not go away, and then, MAYBE, we would do a scan.
So, that's our big plan? We're just going to hope it doesn't come back?? Was that supposed to make me feel better?
(If you're still with me at this point, thank you for reading this! I warned you it was a doozy of a post, but cancer treatment is a helluva time! Almost done...)
After over a long, hard year of treatment ups and downs, including 15 rounds of chemotherapy, three surgeries and 32 radiation treatments, I'm thankful to officially be declared cancer-free!
Great! Now what?
Getting rid of cancer had been my “job” for the past year, and now, it was finally over. What’s tough now is everyone expects me to “get back to normal.” What does that even mean?
What will life look like, now that it won’t be filled with revolving doctors' visits, pokes, prods and scans? What happens now that I’m not being constantly watched? Who am I, now that cancer is gone? The other day, I got a headache and FREAKED OUT...what if it's a brain tumor?? How do I get "back to normal" when every ache and pain sends me into a panic that my cancer has returned? How do I know that it won’t? How do I “get busy living” while under the constant concern of recurrence?
When I was diagnosed, a family member connected me with a breast cancer survivor who greeted me with, “Welcome to the club! The club that no one wants to belong to!” And, at the end of the call, which I'll never forget, she said to me, "I know you don't see it now, but cancer is a gift." What the hell was she talking about?!!
I get it now. The “gift” is a profound awareness of time, how finite it is, who I want to spend it with, but more importantly, who I DON’T want to spend it with.
Everything is more meaningful. After spending over a year under a cancer cloud, I’ve realized “no" isn’t a bad word. Life is too short to do things you don’t want to. I live more authentically now. I laugh and love more deeply. I surround myself with people who lift me up, not weigh me down. Unlike before, instead of worrying about what I don’t have, I’m grateful for what I do.
Looking ahead, the trick now will be BALANCE. Know that for a breast cancer survivor, Breast Cancer Awareness isn't just during the month of October; it's every day. To all those that think cancer survivors are "done" once treatment ends, we are NEVER DONE. We will ALWAYS be worried about recurrence. However, if we worry about it too much, that causes stress, which in turn, isn't good for our health (it's like the chicken or the egg)!
Yes, we may now have a "new normal," but it will be about learning to LIVE with cancer...not in fear of it.