(Well friends, here’s the blog I never wanted to write. The cancer is back. This basically sums up the chaos that has ensued ever since.)
1. First you have to have your life threatened. In this case my life was first threatened when I was diagnosed with Stage 2B triple negative breast cancer in September of 2013 at the age of 30. Twenty rounds of chemo, a double mastectomy and 33 rounds of radiation later I held out hope that I had beaten it, that it was a nasty chapter in my young life and I could move on. Fast forward 5 months after my last treatment and I, by chance, find a lump above my clavicle driving home from Christmas break. I was rubbing it because my husband had hit the brakes pretty hard and the seat belt had dug into my neck. Lucky for me DC drivers are terrible and our car has good brakes.
2. Advocate, pester and make demands. I got an appointment with my primary care doctor the next day. He thought it was a cyst but I demanded an ultrasound. I got that the day after. Ultrasound showed it was enlarged lymph nodes. I called my oncologist and got in to see her a few days later. She was also worried. I begged for a biopsy that day and I got it. Biopsy showed it was positive. I needed a PET scan to see if it had spread anywhere else but my hospital couldn’t get me in for 10 days. My friends and I called every place within an hour and got one for the next morning an hour away and then my hospital magically called back to tell me they had a cancellation for a 7:45 am appointment the next day. The PET scan didn’t show anything in my organs but a few more possibly suspicious spots in other lymph nodes in my chest and armpit.
Thus far I have been told my cancer is “a regional recurrence,” “multi-drug-resistant,” “radiation resistant,” “a local metastases,” “advanced,” “metastatic,” “Stage 3C” (one person called it Stage 4 but she changed her mind after letting me sit with that for about 4 days). No one can agree on what to classify it as and I hate cancer classifications anyway. I loathe being reduced to a probability, a prognosis or a statistic. Usually when someone tells me how long they were given to live that is swiftly followed by how much longer they’ve lived beyond that point so screw what the numbers say.
3. Activate the tribe. I all of a sudden needed a lot of things from a lot of people. I needed to drop everything I was doing at my job. I needed to find all of the country’s best doctors. I needed to fly to those doctors and I knew I couldn’t afford the flights. I needed support. I needed to be distracted. I needed to be told to keep eating food and held until I fell asleep. So I activated the network. I emailed my closest friends and family and I posted something on Facebook. I got a flood of recommendations for doctors and some “my friend knows someone who knows someone who teaches the son of the country’s best doctor” type connections. I got people offering frequent flyer miles left and right. And, of course, I got lots and lots of love.
A note on #3: It requires a new kind of thinking about giving and receiving to open yourself up to the generosity that people want to share. The way I see it is this cancer is way too shitty and too much for it to just be happening to me. It’s happening to all of us. It’s happening to my friends and my family and my co-workers and everyone who reads this blog. I don’t mean that in an egotistical way, like my life is somehow more important or everyone should care about or pay attention to me. I just mean that it’s an illusion that we are alone in this world, that we are not deeply interconnected and intertwined in one another’s fates. As Jon Kabat-Zinn says, “At the deepest level, there is no giver, no gift, and no recipient…only the universe rearranging itself.” I am in desperate need of the universe right now and so it has been rearranging itself for me. I wish I could say I’d be able to send everyone a nice thank you card for what they’ve done but I know that won’t be possible. Instead I am sending my deep gratitude back into the universe for the opportunity to be a witness to the generosity that lives within us all.
4. Delegate. My best friend became my secretary making all of my appointments for me. My other best friend became my alternative meds guru and went to work gathering supplies to cure me naturally. My dad became my travel agent. My mom became my mid-west appointment partner. My husband became my everything- my driver, my meltdown cleaner upper, my snuggle buddy, my rock. My dog became the thing I just had to laugh at even when I was sobbing because she’s just so ridiculous. Thank god for her.
5. Remain hopeful. Always, always hopeful, even when it seems incredibly dire. There is always a new drug coming out, always an alternative treatment to try, always a new doctor with a new idea. Cancer treatment is growing by leaps and bounds and especially for triple negative breast cancer. I try to visualize myself surviving, putting this thing behind me, moving on with my life. Even if it metastasizes further there are plenty of Stage 4 cancer survivors with no evidence of disease living regular lives. I will find a way to conquer this terrible beast one way or another.
6. Be terrified, a lot. I would actually recommend against this if at all possible but who are we kidding? I hate going to sleep now mostly because I know that what awaits me on the other side of my sleeping pill-induced slumber is the panicked feeling that greets each new day. Even with the therapy and the yoga and the meditating and the distractions I find myself gripped by panic over and over and over again throughout the day. I can try to talk myself out of it but my hunter-gatherer brain believes this cancer requires that I either flee or prepare myself for a physical altercation. No brain, I can’t run away and while it’s gonna be a battle it’s not going to be quite the kind you think.
7. Fall to pieces over and over. The fear, the sadness, the anger, the frustration, the unbelievable loss of my life that was just getting back to “normal” has me falling apart multiple times in the day. My brain feels like a wave I am trying to learn how to ride. One minute I feel empowered and confident and “hell yeah, I’m gonna beat this thing!” and the next I am overwhelmed by the journey in front of me, I am frustrated by what my life has become again, I am concerned about my friends and my family and what this is doing to them, I am bitter that this is happening to me. All the feels. Over and over. It’s hands down been the most difficult three weeks of my life. The not knowing what treatment I’ll have, when it will be, how bad it will be, if it’ll work … it’s beyond excruciating. So it’s ok to fall to pieces when you need to. It’s to be expected. I generally feel much better after a good cry and some deep despairing.
8. Get all of the opinions. By the end of this week I will have seen 10 doctors at 8 hospitals in 6 cities in 11 days and I haven’t even finished setting up all of my appointments. This kind of travel is exhausting when your destination is a vacation so when the destination is another doctor who may or may not agree with the last doctor you saw and may or may not have some good answers for you it’s inexplicably exhausting. So far the doctors I have seen are split 50/50 with the direction I should go in regarding treatment. I’ve been offered 3 different clinical trials and have roughly a 50/50 chance of qualifying for any of them but won’t know until tests come back in several weeks. I have no earthly idea how I am supposed to make a decision on what treatment to go forward with. No one can tell me for sure that any of their ideas or trials or drugs will actually work, especially for a cancer like mine that loves to hate drugs and radiation. I am just hoping that sometime in the next few weeks I find something that feels more right than the rest. And if I chose something that doesn’t end up working there will always be something else to try… hence #5.
9. Treat yo’self. I mean this in several ways. First of all, be kind to yourself. Take lots of mental breaks whenever you need to. My therapist calls them, “vacations from your fear.” As she says, “it’ll always be there when you go back.” Binge watch TV whenever you want. Accept the prescription for Xanax when your oncologist offers it. I have extended this ideas to my friends and family and demand that they take care of themselves as well. I need my tribe good and healthy. I know it’s impossibly difficult for them as well. The more they take care of themselves the better they can help me take care of me.
But I also mean take some of the treatment for your cancer into your own hands. Treat yourself with food and yoga and pot and whatever other alternative treatments might be out there. I refuse to leave anything out of my arsenal, any stone unturned. If it’s safe and proven and will treat my body well I am down to check it out.
10. Reassess your priorities. This will probably happen naturally. All of a sudden I realized that all that matters to me is my husband, my family and my friends (and my dog, of course). I know that sounds cliché but seriously, that’s all that really matters. I look at my closet full of clothes and my house full of stuff and I just don’t care about any of it anymore. I think about my big ambitions for who I wanted to be, how I wanted to be seen by the world, what I wanted to accomplish and they just don’t seem that meaningful. I want experiences and time and adventures with the people I love. That’s it. So much of our world is so loud, demanding so much of our attention. I don’t want to give any of it my attention anymore. I just want to be here, with love, for as long as I can. To do that I am fighting to save my life but I am also attempting, amidst the chaos, to just be…here…now, grateful, in love and alive.