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.