Deep Breaths

This little guy (or gal) on the CT machine tells me when to "breathe in," "hold," and "release" so that they can get clear images of my lungs

So I’m finally getting around to writing after many months of slacking off.  Recently (if you can call it that) I wrote about my return to the gym and my courageous attempts to remain calm in the face of conflicting (albeit well-meaning) advice about food and hot tubs and Himalayan salt stones, among other things.  I recounted how I had indulged in a jacuzzi and massage fest as I celebrated the end of chemo with a family get-away.  In editing my story, I made myself look awfully brave. 

Truth is, I’m not always brave.

So today I write about the elephant that barges into the room uninvited from time to time.  Today I write about fear.  I used to think that giving it voice might give it some kind of power over me.  Now I realize that it will only have power over me if I don’t write about it.  So here goes.

From the beginning, my doctors served up my diagnosis with an extra dollop of ambiguity.  This was clear from the way they hemmed and hawed when I asked how big my tumor was.  Now, I know that some people welcome ambiguity.  Some doctors might even consider vagueness a gift of sorts.  But I found it disconcerting.  You see, I wondered whether they: a) didn’t know; b) didn’t think it mattered; or c) didn’t want to scare me.  Of course, the answer might well have been: d) all of the above.  I didn’t push too hard with my medical oncologist, who told me the path forward was all that mattered (she is a very wise woman), but I do remember being annoyed when the first surgeon I consulted (whom I had other reasons to dislike) wouldn’t even show me my MRI.  Of course, I promptly requested copies of it, viewed it at home, and scared myself silly. 

Except for one doctor at Dana Farber, who looked gravely concerned as he issued a second opinion (my husband and I agreed that he was the only doc who looked the way we would feel if we were cancer docs), the doctors I consulted all projected an air of great calm and confidence.  They made it clear that they expected great things from herceptin, the targeted therapy I was to receive alongside chemotherapy.  While I could not un-see my MRI in all of its horrendousness, I learned to put my faith in herceptin as they did.  (It helps that I could actually feel the herceptin working, which was incredibly cool).  My faith paid off four months later when I learned that the herceptin had obliterated all of the cancer in my breast tissue. 

If the size of the tumor were the only thing to puzzle my doctors, that would be one thing.  After all, confusion over its size meant that nobody knew if I needed radiation therapy after my mastectomy or not.  (After gathering three opinions on the matter, I opted to do it).  But there was even more fuzziness to contend with.  A CT scan in October 2015 revealed that my lungs were speckled with marks that continue to cause me and my docs some degree of low-level concern.  I keep this fear in check most of the time, but it flares up whenever I am having trouble breathing.  In the summer of 2016, I experienced lung issues that had me on edge for a couple of months.  It came to a head when I noticed that the smoke from the Fourth of July bonfires on the beach was more bothersome than it should have been.  My lungs just didn't feel normal.  An August CT scan revealed that these issues were most likely due to radiation-induced changes in my lung tissue.  Phew.  Sigh of relief.  

Then, in March of this year I had another scare when I developed a wheeze that settled in for an extended stay.  "Maybe breathing exercises will help you relax," suggested a friend and fellow breast cancer survivor from church.  The trouble is, deep breathing only heightened my awareness of the wheeze that wouldn't go away.  "Do you think you could try belly breathing?" my friend asked helpfully.  The belly breathing might have helped if I had stuck with it, but I felt super silly doing it.  Plus, I just couldn't get myself to do something that made my tamoxifen-induced belly look even bigger.  The dread did not release its hold on me in one day so much as it just dissipated over time, as my breathing improved and I focused my attention on the everyday business of living.  When I saw my doc in June she offered her own opinion for this latest episode of wheeziness: “It was probably a viral infection that caused you to have a reactive airway.”  Huge sigh of relief. 

I don’t focus on my breathing as much these days because I’m breathing easily.  Or am I breathing easily because I don’t focus on it?  (Hmmmm…)  At any rate, the nodules in my lungs are most likely benign, but they have to be tracked every 3-6 months to make sure they’re behaving.  The radiologist who read my scan in June said that this does not look like metastasis.  However, he also suggested that the nodules represent either harmless granulomas (small areas of inflammation where my body has tried to wall off substances it perceives as foreign), scar tissue, or an indolent carcinoma.  And that is one hell of a differential diagnosis. 

Cancer has a way of tricking people and I’m determined not to let it trick me again, as it did when it hid from my doctors for a year after I went to them with my suspicions.  (What is that phrase George W. Bush used to always mess up? –  “Fool me once, shame on you.  Wait, or is it shame on me?  Fool me twice?  Shame on…. Well, just don’t fool me again!”)  So I return for scan after scan after scan. My next scan is on the 28^th of this month.  At least they scheduled it for after Thanksgiving.  The last two weren’t as well timed.  I had one right before Christmas and the other right before my birthday. Ugh.

When I started this blog, I lamented that I didn’t have fancy numbers of the type that folks in online chat groups affix to the end of their posts to describe their medical status.  Well, this June, while going over my lung scans with an oncologist at Mass General, she mentioned in passing that my cancer was a T3.  And just like that, after 19 months, I had a doctor who would give me numbers: T3Nx. 

The ‘T3’ means that the tumor was pretty big.  Over-5-centimeters big.  Mind you, the T3 is just a guess, since the MRI was fuzzy and the chemo had destroyed the cancer by the time pathology was able to take a gander.  I know that some of my docs view it differently, because they’ve dropped hints about their hunches from time to time.  But this gives me something to hang my hat on.  Some semblance of clarity.  The ‘Nx’ means that there is some ambiguity about whether or not my nodes were involved and that is something I will just have to live with. 

So now I’m forced to admit that perhaps it’s best that my docs equivocated for so long.  Maybe it’s better to find out how big the Goliath was after you’ve vanquished it with your slingshot…  I don’t know.

Okay, now that I’ve told you all this, it’s time for me to take a deep breath.  Oh, and I will try not to focus on my lungs too much as I do it.