Test Results: A Threshold and Possible/Likely Decline

The test results are in. The tumor is malignant, triple negative (again), and under my armpit, near the original site. It’s 5 cm, up against the rib and according to the oncologist, “trying to touch it,” and currently any operation to remove it would result in disfigurement. The goal now? Reduce the size so that it can be safely removed.

No mets to organs or bones, thank God.

But that’s small consolation right now. The bottom line is that it’s back. Not two years after finishing treatment, and it’s back. The grief and shock are not as great this time around, at least not visibly, but I am numb. Numb and deeply depressed and angry. My grief is not the sudden slam against a wall, but more like slow drowning.

Because this is a kind of threshold.

During the first round of treatment, the word “cure” was bandied about by doctors, nurses, myself and friends -- and it floated through my mind like a bright butterfly. Sometimes it would land, pause for a moment, and fly off, but it was often in view. Optimism was still a possibility, I could look to the sunset and plan for Hawaii. Phrases like “long-term survival” and “preventing recurrence” became touchstones for me, the marker on the racetrack that gave me strength for another lap. I started saving again for retirement. I planned a few trips.

But the cancer is back. And what that means is that treatment options shrink. It means that the cancer is wily, never quite went away, had dormant cells that managed to resist the Strongest Possible Regimen that Medical Science Had to Offer. It means a growing resistance to chemotherapies, and a higher likelihood of future recurrence. It means, in all likelihood, repeated comebacks of the cancer kid.

And my own weakening body as each future treatment unfolds.

I don’t know what to say. I wake each day and walk into my daughter’s room, see her breathing, see her eyes closed.  She doesn’t know yet that the cancer's come back. I want to preserve her innocence a little longer, protect her from the fear and grief to come. Angel of childhood, I pray, protect her from the dark bed of sadness. Give her a mother who is here to keep. But I know this is not heaven. 

It is earth, and there are only birds, and daylight, and the ongoing traffic.

Things Not to Do When Waiting for Test Results

If you are waiting for test results, welcome. Welcome to the place where the ground is removed from beneath your feet, and the ship is listing left, then right, but never centered. It's the place I'm in now, waiting. Waiting to hear what I know already is not good news. It's just a matter of one side, which is not-so-bad, to the other, which is The Worst. Hard not to get seasick, hard not to crash. 

But I've learned a few things on this awful road. A few things not to do, now that I've been through it once already. This is by no means a definitive list, and take it with a grain of salt. I'm a big fan of the "Whatever works best for you" school of thinking, yet I hope some of these are helpful. They come from my own experience, and the fact that I've screwed up on every single one. Badly. 

So here it is, the not-so-definitive and only partially complete list. Please feel free to add your own! 

If you are waiting for test results, do not:

1 1. Google. I know, the temptation lurks but trust me: Google is not your friend. I don’t know what is wrong with their cancer search algorithm, but there seems to be some programmed result that always takes you to The Worst Possible Prognosis, or Death. They don’t tell you about clinical trials or new research, or long-term survivors. It will not give you hope. The lesson? You and your disease are not an internet search. It will only make you feel bad. Don’t do it.

    2. Tell everybody. I learned this the hard way. After my first diagnosis, I called and told everyone. Pretty much right away. I was in shock, terrified, flailing desperately for a nonexistent emotional lifeboat. My unregulated emotional state created havoc on my family and friends although, bless them, bless us all, we have all forgiven each other. This time, after the initial news from the recurrence, I was in shock and wanted to call and cry and scream and tell…..but I didn’t. And I’m glad I didn’t. As much as this diagnosis and the process impacts you, it impacts others, too. If you are on a work team, it impacts morale. It impacts your friends, your family. Also? If you’re still waiting for test results, the truth is that you don’t know enough yet. So:  Be judicious in who you tell, and why, and make sure they sit on your side of the bleachers. In the coming days, you’ll need them.

   3. Retreat too much. As an introvert, I understand the need to curl up and withdraw from this world. Dear God do I get that. And yet and yet ---- it helps to keep a foot out the door, one coffee date, one needed time to phone a friend. Also: people want to help, people want to feel needed. So, while you/we/I sit on the boat without a bottom called Waiting, it can help to keep connected. But  take this with a grain of salt, too. Weep and stay home if you need to. There’s no one way to grieve.

Bottom line is, if you have been given a recurrence diagnosis, I offer sincerest and heartfelt empathy. Because guess what? It’s baaaaaccckk… and that’s a whole new round of what-to-dos, isn’t it? Terror again, fear again, and the knowledge that the first round didn’t knock it out. I’m so sorry. I’m so very sorry.

You are not alone.

A New, Not Catholic Mass.

For three years now, it's happened near Easter.
The first year it was three days before. The initial diagnosis. The shock.
Year 2 was treatment recovery.
Now, year 3, more April news: a shadow. A mass near my rib. A Biblical vengeance, 5 cm worth. The size of an unborn baby's fist.

Something unnatural has arrived again in my body. Just when I was beginning to trust again in the world, turn back to my career, turn to saving and paying off some debt, turning to see my kid start high school --- this. Now this.

Everything has stopped. I am stopped. My thinking has stopped, my emotions, summer and vacation plans -- stopped. And I haven't told my family yet, haven't yet told my kid.

I am on hold until the biopsy. The biopsy will be difficult, it's in a difficult spot. Possibly inoperable. And until it's gone it's growing, growing, growing.

I am stopped but this thing -- I shall not yet name it -- is alive.

On This Somewhat Happy and Auspicious New Year.

It's a new year with cancer.

Just in writing that I feel anger, waves of sadness, some relief, the grey pallor of a new normal filtering the day. And if you're reading this perhaps you've either had it, or know someone who had it, and in either case it's a different kind of new year than BC, Before Cancer.

People talk about resolutions. In my case it's one word: "survive." I finished treatment last January but, given my diagnosis, there is "high risk" of recurrence, and every ache, every pang can lead to a spiral of OMG it's metastasized anxiety, complete with repeated advice nurse phone calls and bouts of depression. I'm learning to manage that, but it's a process.

When you have lost a breast or breasts, and you have finished treatment, what do you resolve to do? Here are some thoughts for this 2018 new year.

1. Begin to love the mute pucker that was my breast.
Is that too graphic? I am sorry. But there it is. It is scar tissue, folded like two lips covering missing dentures. It is a cavity, the wink from a death cult I must face every day. Because I do not like surgery and am at risk for lymphedema, and have also not cleared the 5-year window for Triple Negative survival, I am not getting reconstruction. I may not ever. So, I am learning to accept this gash, this cut, this scar, this line, closure, wound, sealed letter, removed IV, shut lid, mailbox, stubborn- toddler- not-speaking, inner life, hum-thrum lapsed Catholic revelation unasked-for tattoo forever embedded on my chest.

2. Try to trust the world again.
Oh, this one's tough. Cancer knocks that ship over and forever causes you to test the tilt of the floor below your feet. How long will I live? Should I get new clothes, save? Buy a trip? Plan for (a purchase, remodel, retirement, savings, next-year-whatever?) It is a cruel thief of optimism and hope. And so, slowly, slowly, I am going to begin to re-enter the field of possibilities, but --- and we know this, don't we? --- I will never look at the sun again. Mortality will always be the skeleton below my skin, knocking around every once in awhile or showing up with a ledger, just to check. And yet, going on is going on. And there are others: you, sisters and brothers (metaphorical and real), people re-entering and entering all the time. There is a pool of companionship that cancer can bring, a kind of camaraderie that even with the breath-holding fear, such as Emily Dickinson writes "zero at the bone," helps us move through. And so I will continue to walk forward, watch my step, and ask for help as I need it. And offer this hand to you, too, traveler.

3.Balance health with sanity.
The fear of food, chemicals, and certain lifestyle habits can strangle the enjoyment out of life. I have erred on the side of caution, but would like some more balance. There is some grieving for the loss of my old treats: wine/alcoholic beverages without worry,  sugar without care, buttercream frosting, Swedish fish, orange slices, IKEA cinnamon rolls, green tea lattes, Baskin Robbins ice cream, fried chicken, creme brulee, jelly beans, --- this list is a waterfall of goodbye indulgences. The thing is, I never ate much of these. I ran 5- and 10k races, drank green tea. But......well, goodbye. Mostly. I must reduce the already-reduced list. The good news? I can amp up good vegetable and fruit recipes, explore new cooking techniques, raid the farmer's market for the latest seasonal treasures. That, too, is sanity. I also remain committed to the idea that nothing, in moderation, is off limits. I must survive, but I must also live.

Dear reader, what are your ways to move forward? How will you return to your life? I wish you all, all, a year filled with new treasures, that may first be covered with dirt but that after digging yields sweet surprise. Love out.

I Kissed Banana Pudding, and I Liked It.

I eat sugar. This has nothing to do with triple negative breast cancer, or maybe kind of, but I thought I'd put it out there that I do eat it, in moderation. That hoo-ha about "cancer feeding on sugar?"

Tobacco-in-a-spittoon pt-ting!

People with cancer are robbed of a whole world. We are robbed of safety, of comforts, of the ease of eating anything without worry. We are robbed of a sure future (and I know that's illusory, but health allows you to take tomorrow for granted) and we are robbed of time. With stage three triple negative breast cancer (TNBC), the risk for recurrence is higher than average.  Life's urgency increases and the recipe magazines - they call my name.

And so, one of the lifestyle changes I have made is to increase my intake of fruits and vegetables, as well as green tea. I have exercised my whole life. Reader, these do not make me special and cancer could come back anytime, even with these changes. I point these out to highlight that there's nothing unique about what I'm doing. Thousands of people make dietary and lifestyle changes every day; thousands of people get cancer, thousands go into remission. Ebb and flow. Ebb and flow.

Which brings me to banana pudding. I was salivating over old issues of Taste of Home magazine and found one with a recipe for banana pudding with - get this (eyebrows up and down, up and down) - Cool Whip, sweetened condensed milk, cream cheese, and SUGAR. Also, bananas. And vanilla extract. Gathering all my pastry mouth and lick-the-bowl anticipatory mojo, I baked and whipped up a glorious feast of cloudy sucrose, underscored with the yellow banana sweetness and capped with sweet cream. Dante Alighieri, you would not live here.

Bliss.

Thus, the point. Do not, in this short earthly measure, deprive yourself of pleasures. Hell has levels enough, and baldness makes no saints. Push off the tire swing and lift your feet; eat and savor and whirl at the bar, because you know, you know, after all the crazed spinning, you will always return to stillness, to the ground.

Cancer Didn't Make me a Better Person.

It didn't make me nicer.
It didn't make me suddenly brave.

And if you were to ask me if there were positive lessons, if the universe were sending me a message, I might:
a) Give the finger.
b) Laugh maniacally (cue plastic wind-up teeth).
c) Drive over a rodent quickly.

Which is to say that no, there are no messages. The positive lessons are mostly in your head.

Is this bad? Dear reader, the danger in this thinking is the implicit blame: if there is a message, then somehow you were "selected" to receive it. If there is a lesson, you must be The Student Who Hears. But these are fallacies: cancer is a random selector. It is secular, it is true science. Hear me: You are not special for having had it. This is not so terrible. For me, it was a relief.

And the last thing any patient wants is more health advice, more despair. Walk very gently before you pile any more "shoulds" on the cancer patient's list. She or he has had enough already.

Cancer didn't make me more spiritual. If anything, I'm a bit more petty, a bit more remembering. I look at swimsuit catalogues and envy two-breasted women. They are like birds to me now, elusive, robin red-breasted winged creatures, flitting from branch to branch in a world where it is always spring.

Cancer didn't make me kinder. But it did make me more real. Authentic. Mortality's door, one that before was in a room in my life's attic, is my front entrance now, and it is open and a strong wind is blowing. I walk through this door every day. It tells me not to hurry, but to hear.

And cancer never made me a warrior. It made me face choices and proceed. It made me ill, made the daylight dim, made me weep. These are not the stances of a soldier. They are the stances of suffering, and I do not wallow in them. But I will tell the truth.

What did cancer do for you? Did it change you?

Statement of Limitations

In which we resolve that: "Cancer is fucked."

If you want to talk about how unresolved anger causes cancer, fuck off.

I'm not going to mince words. Cancer. Is. Fucked. And I'm writing with a pseudonym which provides me some freedom to express the not-so-nice lady sentiments, in a forum that I hope helps some of my sisters and brothers with breast or other cancers to allow in the full range of emotions, from the pissed off table slam to the full on crie de coeur. 

My intent with this blog is to document not the "journey" but some small vignettes, pros and cons, and thoughts and impressions as I deal with this disease.  I'm not against alternative therapies.What I resist is the implied blame inherent in many of these: that if only you'd taken more cannabis, if only you'd been a kinder person, if only you'd done more of this and less of that, well....

You know. That is a road that will take you to despair. And that, dear reader, is not anything you need more of. Especially if you have, or if someone you love has been diagnosed with the dreaded rhymes-with-dancer crab.

As for the title of this blog, Chesty Puller is the most decorated marine in all of American history. He also said, "They are in front of us, behind us, and we are flanked on both sides by an enemy that outnumbers us 29:1. They can't get away from us now!" I normally resist military analogies, but this one speaks to me. 
Also, there is the obvious nod to the physical manifestation of the mastectomy. Chest, pull. The side of the chest that no longer has a breast is a line, two pulled segments of flesh stitched tight. Like a tight-lipped smile. 

Or grimace. 

Posts will vary in length and content, and will probably be occasional.

Your comments, feedback, experiences with cancer are most welcome.