Waiting to Exhale

A note to readers: I know and appreciate that I speak only for myself, always. However, in regards to this particular post I want to clarify that I do not intend my use of “we” to speak for a beautifully diverse community of people facing cancer, though some of my words may represent the experiences of others. Most especially I do not believe I can speak at all for those with metastatic disease; it would be inauthentic to even suggest as much. And so, if you do not see your experience in these words, I invite, nay welcome, you to add them to the dialogue.
It still happens, even after nearly ten years – a follow-up study, a blood test, something, and it sets off “cancer” mode. For me it is rare. I am usually more worried about the impact of the actual test on my body, rather than the results. I hate the CT contrast and I don’t handle it well. But the morning after the actual scan is through, I’m not typically anxious about the results. They are just information.

However, what happens “after cancer” is one of the many reasons cancer survivors band together. Once cancer is over, for everyone else in the world, it’s OVER. The prevailing attitude is that we are lucky to have survived, and cancer fades into the woodwork. Cancer ceases to be the drama du jour.

Don’t misunderstand – I find this “new normal” a good thing, and I think most agree. I can’t think of a single survivor I know who wishes to dwell on it, or relive it, or be caught up in worrying about it. Though it may alter our world view, in many ways it fades for us as well. Mostly. Being in active treatment is very different from monitoring years out. But it’s never over. Chemo-brain persists; as do enduring aches, pains and numbness in various parts of our bodies; we remain at risk for lymphedema, or struggling with it’s impact; subsequent heart problems can crop up years, even decades after treatment; we often face the reality of losing our fertility; there are long-term toxic effects to the heart, lungs, kidneys and more; there is the potential for recurrent or even treatment-induced cancers years down the road; and more…. For friends and family, cancer is yesterday’s news. For us, cancer is the disease that keeps on giving.

That said, I’m at a point where the red lights are flashing and the sirens are blaring and the anxiety of follow-up is lurking behind every corner, especially under the cover of night. The truth is, the last couple of years have been a bit rocky, as my monitoring studies seem to ask more questions than they answer. Unfortunately, there is little guidance offered on how to best monitor young survivors. That said, we have been following a rapidly rising tumor marker for nearly two years. Other studies have shown nothing…PET scans, CT scans, bone scans, MRIs…yes, far too many scans, but they have all been NED (no evidence of disease).

Until now. August saw a follow-up CT scan which shows healed bone metastases; bone mets which were not previously seen, nor treated. They simply appear, as if by magic, healed. Bone scan – NED. Follow-up PET scan – NED. And the marker continues to rise. As Alice quipped, it keeps getting “(c)uriouser and curiouser!”

It’s not been easy being the outlier…the one who’s tests make no sense, the one who doesn’t follow the rules. But then, I’ve never been particularly good at following rules – I walk my own path. And this is where it’s led. The definitive test is a bone biopsy. As as I write this I am awaiting the result over a holiday weekend. And it’s gotten to me.

And its a bit odd – my cancer was over nearly 10 years ago. Yesterday’s headline, right? Everyone moves on, and so it should be. There are children to get ready for the new school year, the transition out of summer mode, and in my house, the joy and excitement of a Bar Mitzvah to prepare for. So it has been simpler to keep this bit of “news” and its accompanying anxiety, inconclusive as it is, to myself. At least until I exploded on my husband last weekend because there were dishes in the sink, and the medicine cabinet wasn’t closed, and the laundry wasn’t put away, and the dog was barking, and whatever else I could think of to pile on. That is to say, I was terrified and even he seemed able to go on his merry way…. Rational me knows better. While I express everything, and not always kindly, he keeps it in as a means of protecting me.

3 AM has once again become my witching hour, with thoughts morbid to mundane racing through my head at warp speed…

I need to find a volunteer to help with an upcoming event…
And make some membership calls…
And pay my own dues…
Is everything together for the morning, including my son’s lunch?
Who will make his lunch if I die?
Will I be here for graduation?
Will I see him marry or have grandchildren?
Will he still get together with friends if I’m not here to arrange it?
Will they laugh or socialize?

How long will that take until they find a “new normal”?

STOP! STOP!! I need sleep, not this!

I’m not ready for this…

Of course no one is ever ready for this…

I ask these errant thoughts to leave. I change the subject. I condemn them. Still sleep eludes me. I get up and turn to Netflix for company. Nothing with illness. Nothing with children who lose parents. Mindless distraction…Ally McBeal. I am reminded of having banned classic Disney so many years ago. Too many evil stepmothers for a boy who might well have to contend with a stepmother.
Will he have a stepmother?
I can’t protect him now the way I did when he was three….
He’s going to ache, probably more than anyone, and it will be because of me…
I simply cannot protect him…
He doesn’t deserve this…
None of us do…
QUIET!!!!!
I share these thoughts with no one. I know what they will say. We, survivors, are supposed to feel lucky and live with gratitude always. And while sometimes it’s even out of their own anxiety for our fates, others need us not to falter from that path; it helps them feel better – both in their desire to protect and keep us, and in keeping the “there but for the grace of God go I” voice at bay. It makes being a survivorship a rather lonely place sometimes, isolating us from the ones who may love us most…and most can’t tolerate hearing that we are afraid, or that we may die.

“You have to stop living in your disease,” urges one friend.

“Focus on other things,” suggests another.

I am blessed to have friends and loved ones who aren’t that way and whose priority is to support our family. But I encounter the others as well. They aren’t wrong, and I know they are trying to be supportive. But do they really think I WANT to wallow? Of course I do not. But at the same time, I believe that I must have these thoughts. I have to allow them to flow through me, so that I they do not get stuck in me. If it’s wallowing, so be it…I fear that the only path out is to discover that, in fact, my cancer has returned. I have a right to think about that a bit.So pass my nights. I hope that “knowing” will bring relief, and not just a more complicated puzzle. In the meantime, if you’re around at 3 AM, you can count on me wondering what I should wish for in the blue glow of Ally McBeal reruns…*This post was written during a two-week period when I was working my way through a series of scans and tests to determine if my cancer had returned. I have refrained from publishing it out of respect for close friends and family with whom I had not shared the journey until we knew the outcome. More on that soon…

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9 Comments (+add yours?)

  1. denataylor
    Sep 10, 2011 @ 20:47:55

    So beautifully written. You have captured my sentiments that it is never “over” for us. Thank you for that. You are in my thoughts at 3 AM and whenever.

    Reply

  2. elynjacobs
    Sep 11, 2011 @ 06:31:38

    I agree, and Lori, this is an excellent post. It never really is over, and I too react badly when a doctor suggests a scan or drug. I know this cannot be good for my body, and yet, I understand that sometimes we must have the scan or take the drug. Just another side effect of cancer…the constant worrying. Thank you for this profound post…so eloquent and inclusive. Thinking of you and hoping for excellent test results. be well, elyn

    Reply

  3. Jessica
    Sep 11, 2011 @ 16:44:08

    Lori, you have an amazing way with words. I’m not surprised since you are truly one of the most amazing women I have ever met. You and your family are in my thoughts and prayers and I love you.

    Reply

  4. Karin Kroll Ross
    Sep 12, 2011 @ 09:55:05

    Nicely written! Not sure if you do, but you’d be a great support group leader, liaison for patients, advocate, etc. And someone needs to have you write a regular magazine or newspaper column!

    Reply

  5. toby
    Sep 12, 2011 @ 11:21:16

    So….. as one who has already gotten the bad news twice I can only say that it
    does not get better or worse it just keeps on. This week I forgot about my scans because my kid needed testing for growth hormones. I will set up the new scans. Now it is no longer a matter of if, it is when. Like summer wild fires we wait to know were they are and then we put them out. The good news is that after 10 years I am still here to see my children Bar/Bat Mitzvah, I am still here to fight with my husband when I am freaking out. I am still here to take those dame tests and talk to the Dr and fight the wild fires that will come. Life is good as long as it is here one day at a time. Now tell us the rest of your story is is game on?

    Reply

    • Lori
      Sep 12, 2011 @ 15:03:43

      Toby,

      I completely understand! And if I can be of any support on the growth hormone front, give a holler! Hope you are well!

      Reply

  6. Marie Ennis-O'Connor (@JBBC)
    Sep 13, 2011 @ 10:12:00

    Lori, you speak for so many of us!

    Reply

  7. italn1
    Sep 13, 2011 @ 14:07:11

    Lori,
    You have captured every single one of my thoughts/feelings that I’ve experienced to a T! There was a time that I started to think I was going crazy-that no one else experienced these happenings and that it was just me, all in my mind. I know better now.
    You have written this perfectly!
    Be well -my thoughts and prayers are with you and your family

    Reply

  8. Jan Hasak
    Sep 15, 2011 @ 14:26:33

    Lori, I’ve been there and done that. People have accused me of not moving on, but they don’t know the reality. We just have to move on, knowing that what we are doing is right. You are in my prayers.
    XOXO,
    Jan

    Reply

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