Posted by Kathy Waller
Very long, but sort of necessary
On January 29, I was diagnosed with Stage IV metastatic breast cancer. Two kinds of cancer are present, not a common occurrence. One kind is aggressive but easier to treat than the other, which is slow-growing. There is a lesion in each lung. One was biopsied, so we know which kind it is. My oncologist said there’s no reason to think the lesion in the other lung is the same kind, but since that lesion wasn’t been biopsied, we don’t know. The radiologist preferred not to biopsy it because it’s near the heart. Sticking needles near the heart isn’t a preferred protocol.
Before I go further, I must say this: Please don’t say you’re sorry. I don’t feel ill. I have no symptoms except one lump I can feel. I’m sorry–really, really sorry, big-time sorry–I’m in this fix, but I already know you’re sorry, too, so it’s okay not to say it. Hearing it can be a bit of a downer.
I announced the diagnosis to a friend over lunch. We discussed the situation from all sides. Before we parted, she said, “You know this is an opportunity to write.” I said, Yes, I’d already thought of that.
Newbie writers repeatedly ask themselves–and each other–When can I call myself a ***writer*** without feeling like a fraud?
Answer: When no matter where you are, or what you’re doing, or what you’re feeling, you think, I can write about this.
From now on, when people ask what I do, or what I am, I shall say, in a firm and forthright manner, as if they’d better believe it or else, I am a writer.
I responded to the diagnosis with a combination of O God and Okaaaayyyyy…. The oncologist spoke of palliative care and statistics. I despise the word palliative, and the statistics were mind-boggling, and not in a good way. But I told David I’m going to fight, and he said he was, too. I said I was going to be happy while I fought. He said, “That’s what fighting is.” I’ve never heard a better definition.
When a navigator (survivor) from the Breast Cancer Resource Center (BCRC) called to introduce herself, I told her I hadn’t read the stack of literature the surgeon had given me–a looseleaf notebook, a spiral notebook, and a passel of booklets–because after glancing over a couple of pages, I decided I didn’t need that much information. I said I guessed I was in denial. She said a little denial can be a good thing.
I dumped the stack of paper in David’s lap and invited him to read it. He did. He’s a good person. A brick, if I may use an old-fashioned word that sounds funny now but in this case isn’t. He takes copious notes, asks questions, knows what meds and chemo drugs I take, records appointments on his calendar, remembers what other questions we need to ask, and and and…. He can recite most of the info from memory.
I’ve vowed several times to step up and take more responsibility for the fight. To date, I’ve learned which anti-nausea pill to take first and which to take if the first one hasn’t worked. I know chemo #4 is scheduled for April 15, too, plus a few other random facts.
On the not-denial side–and to date–for a few days after a chemo infusion, I feel kind of meh but generally okay. However, I become fatigued easily. But I forget about the fatigue and do too much and then pay for it. The oncologist said, “Yeah, everybody does that.” The first time, I paid with a day in bed. Then, a couple of weeks ago, I stayed up half the night, three nights in a row, trying to write three hundred words for a guest blog, and paid for over-reach by thinking, What if the chemo doesn’t work?
The good old What if?
The thought had already crossed my mind, of course, but this time it was accompanied by the line from It’s Always Something, Gilda Radner’s account of her experience with ovarian cancer:
I had wanted to wrap this book up in a neat little package. I wanted a perfect ending. Now I’ve learned the hard way that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end.
I’ve not read the book, but a long time ago, I read that sentence, and it stuck.
The BCRC navigator called again to see how I was getting along. We I met for iced tea and conversation, and I unloaded a couple of million words on her and said I would attend a meeting of a group the oncologist had strongly recommended (twice already). I perked up some more. But then came the third visit with oncologist. He ordered a CT scan to check progress, as in, Is the chemo working?–and the possibility of No surfaced again. After a while, No morphed from possibility to probability. Then it began to feel like a prediction. More sighing, combined with an undeclared expectation of the worst.
But I knew that surgical oncologist Dr. Bernie Siegal says cancer patients must tell the truth, that if you go around claiming, I’m fine, just fine, your subconscious, which takes words literally, will believe you, and won’t tell your body it must fight. He recommends using a grading system: When you feel like C-minus, admit it. So I told people who asked, and some who didn’t, that I was a D-minus: scared to death.
Anyway. I had the CT scan yesterday afternoon. The oncologist had stressed that he wanted me to have the results by the second day at the latest–I like him a lot–so if we hadn’t heard by then, to call his office.
Later I realized that when you have a scan on Thursday, the second day is Monday, which leaves a weekend of not knowing in the middle.
But. Here’s where things get better.
The oncologist called Thursday afternoon, not two hours after we left the imaging center. One lung lesion has almost “resolved,” the other has reduced in size by nearly half, one lymph node has reduced significantly. However, a lymph node near where the bronchial tubes branch off from the trachea has enlarged significantly. He said it could be just “reactive,” doing what lymph nodes normally do when you have, say, a cold–but not to count on that. We’ll follow it closely, see what it does, and if it doesn’t shrink, figure out what to do next.
In short, this is a mixed result, but the oncologist is pleased. What pleases him pleases me. So I’m pleased.
Backing up a bit, at our second visit, oncologist asked whether I had more questions. I said, “No.”
He said, “Okay. Well, your next question should be, ‘How will we know the chemo is working?'” I told him I’d assumed he’d get around when he was ready.
Now, Dear Reader, your next question should be, Why did it take you so long to write this post?
For a variety of reasons, I suppose. Because I’ve only now decided how to approach the topic. Because I wanted to hear some good news before writing. Because I wanted some grounding–I like certainty; even relative certainty–before writing.
Because I didn’t want to.
Because writing about any subject makes it real.
Years ago, I put off writing a letter because I’d have had to say in it that my father had died. I still haven’t written that letter. Writing it would have made the death real, and I preferred it stay as it was, hovering on the edge of reality.
Writing about Stage IV cancer would have made every detail, every statistic, real. I wasn’t ready for that. Now it’s okay. It’s real, not like it was yesterday with No in the ascendant, but real with mixed but pleasing results.
Ending tacked on Tuesday night: That’s the post I wrote last Friday, or most of it. I started working on it during chemo infusion #3 and continued that evening and into the night. Chemo drugs seem to invigorate me. Sunday, however, the crash came. The “flu-like” symptoms the oncologist had been asking about finally hit. That lasted only thirty-six hours or so, and it could have been worse. However, it left me in a nasty mood from which I haven’t emerged.
Last Friday, this was a chirpy post about adventures in breast cancer. Tonight–or, as it will probably post tomorrow, the 30th, a day late–it’s a non-chirpy post written by someone who’s in a nasty, nasty mood. Because I took all the chirpy parts out.
I shouldn’t admit that. Even if it’s evident, I shouldn’t admit it. I should pretend to be chirpy. I really, really should. That’s what nice Southern girls are supposed to do. Chirp.
But I remember the name of the English honor society I joined in college: Sigma Tau Delta. Sincerity. Truth. Design.
And I think of Dr. Siegal: If you’re feeling D-minus, say you’re D-minus.
So what this post lacks in Design, it makes up for in Sincerity and Truth. Tonight, I’m D-minus.
Having said that, however, I think tomorrow I’ll be much improved.
Oh, all right. As long as I’m already late, I’ll mention one achievement: After watching selected videos on YouTube, I have learned to wrap a scarf into a turban. For one devoid of manual dexterity, that’s big. The first two times we appeared together in public, the turban stayed put, and I received compliments. During Friday’s chemo, filaments of fringe kept popping out. They looked like little bitty antennae.
Obviously, Friday’s edition was poorly engineered from the get-go, because as soon as I got home, one end slipped out and draped down the side of my face. Fringe crawled over in front of my glasses.
I reminded myself of Lord Byron in Albanian dress. Except Byron’s headgear probably isn’t called a turban.
And he’s absolutely gorgeous.
I look like I wrapped a scarf around my head, and shouldn’t have.