Do bumps on head mean cancer metastasis?

No. Or at least, not always. Two Sundays ago, I googled that question, in endless combinations, and found no answer. I was alone, the others having gone to church, and I needed to know — were the squishy red bumps on my head a sign of brain mets, as my Grandmother’s had been so many years ago? Or were they irritation from bone mets spreading to my skull? What were these strange bumps, and how could I find an answer on a Sunday afternoon?

I ran my hands through my short hair, exasperated at the lack of information on the net and wracking my brain to recall other forums and bulletin boards. As I rested my hands on the desk, I turned them over, questioningly – and found the palms crossed with clumps of hair. I laughed, I cried, and my mother came in to comfort me. I told her what had happened – I was losing my hair! – and she put her arms around me in reassurance.

No, no, you misunderstand, Mom! I wasn’t crying for the loss of my hair. I was crying in relief – my fears had not come true – and I was not one step closer to the end. I was just losing my hair, a sign that the chemo was working, attacking the fastest-dividing cells, as it was supposed to do.

As I explained to my sons that night, this kind of chemo attacks the cells just as each divides into two new cells. The fastest dividing cells in a person’s body are cancer cells. The second fastest are the ones that make your hair grow. So when we see Mommy’s hair falling out, we know (hope) that the medicine is killing both the cancer and the hair cells as they divide!

The kids accepted this, and asked me what cells are next – stomach, I explained, which means my stomach may hurt over the next few weeks as well. We ended with great big hugs, and my 7 year old surreptitiously tugging on my hair in the back, just to check.

In fact, the next night, just before bed, he met me at the top of the stairs and yanked on it! I yelped, not remembering the previous day’s conversation, but just as quickly I remembered, lifted him up in a giant hug, and laughed and laughed with my smart boy, checking for himself that the chemo was working – reassuring himself, and me, that we would be okay.

It’s been a couple weeks now, and my hair has significantly thinned on top, but I still have hair around the edges and faith that the chemo will work. Today I’m back at chemo, scared to take it on top of pneumonia, but scared even more to skip another week. A silly fear? perhaps, but when my day comes I know that I will have done everything I can to fight this thing and win one more day over cancer.

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The Path Report

When you have surgery to remove a cancerous mass, or several, afterwards you don’t really know much until about a week later, when the path report comes back.  It’s weird and strange and confusing, because the surgeon was just mucking around IN your body and all, but in fact it’s true.

After the surgery, the surgeon comes out to the waiting room and tells your family how the surgery went.  She tells them why it took longer than expected (in my case, she was stitching up the blood vessels and lymph vessels carefully, so carefully, to help avoid lymphedema, and the resident, who is in plastics, was tidying up, helping to avoid the dreaded “dog ear” left behind by mastectomies without reconstruction), what they saw or felt (in my case, lymph node after lymph node that was lumpy, bumpy, or otherwise suspicious for cancer, and which they pulled as if they were swollen grapes), and what tissue was taken (the whole pad of lymph nodes, and more nodes besides).  And then you wait.

First the family waits for the patient to wake up, and then the patient waits for the world to return to normal (oh! anesthesia!) and then they all go home and wait for the results.

Which brings us to today.  We headed to the cancer center yesterday morning to have the softball-sized lump of fluid dispersed.  Now, I realize this is way too much TMI for the bloggy world, but I swore I’d be honest and help lift the veil around cancer treatment, so get this — to drain the fluid, the surgeon sticks a GIANT NEEDLE directly into the still-healing scar and just pulls the fluid out.  No anesthesia, no numbing, no freakin’ ice involved — just a pump, essentially, because, in her words “this won’t hurt; it’s all numb in that area.”  Um, NO.  But it wasn’t painful, just a little stinging where it pulled on my stitch.  It was weird as anything, but OH, do I feel better!  (As per usual, I’m on the ugly side of the side effects, and I’ll have to go back for this at least once and maybe twice again this week.  Annoying, but really just from a schedule perspective.  I’m trying to work during preschool, not fill the time with hospital visits!)

Anywho.  As C helped me sit up (Have you ever tried to sit up without using your right arm/shoulder, which aggravates your lymphedema on the right side, or your left arm/shoulder, which could cause lympedema on the left side?  Without falling off the exam table?  Awkward!), the surgeon sat down.  (Why isn’t she leaving? I mean, I adore her and all, especially after the incredible patience she had stitching up all those vessels so nicely, but?)

The path report came back.

Oh.  I wasn’t prepared for this.

Sure, we were going to ask about it, as active participants in my care, but we didn’t expect it to be back and her to be prepared to discuss it until Thursday.  At least.  I’m still in my gown, gaping at the front awkwardly, and I’d really like to put my own clothes back on now, thankyouverymuch.  But we listen.

And here’s the deal.  It’s bad news and good news and weirdness and relief and fear, all wrapped up together.  I’m not sure I can convey it all here, but I’ve been thinking of nothing else since this moment and I need to tell you.  Also? It’s 4 a.m.  If I don’t deal with this now, I’m just going to anguish about it, and there’s no going back to sleep at this point, so here goes.

Thirteen positive nodes.

The pathologist studied the tissue that the surgeon removed, and the student or nurses put in carefully separated vials in the operating room, and he studied it under the microscope or whatever amazing instrumentation they use in that lab now.  The tissue contained 28 lymph nodes (that number isn’t important — it’s essentially all of the ones under my arm and a good number besides).  Thirteen were filled with cancer.  Adenocarcinoma, said the path report, which I learned means cancer in a glandular tissue like lymph nodes.

I don’t know if you remember this, but waybackwhen, my oncologist said that there would likely be no chemo, and there would only be radiation if there were at least four positive nodes, which she didn’t expect, although six showed up on the PET scan.  So we’ve been thinking that I start radiation in six weeks, after the scar heals and I lead a lunch-and-learn at a conference and co-lead the proposal writing workshop and turn in the first six chapters of my book and the kids finish school and summer begins and I can rest on the hammock if I need to, but really it’s no big deal.

Oops.

Thirteen positive nodes changes all that.

We haven’t yet met with my medical oncologist, but my surgeon has, and it looks like there may be chemo indeed in my future.  My near future.  Everything on the schedule is on hold.  The lunch-and-learn. The workshop.  The seminar at JPL.  Preschool.  BlogHer.  The kids’ school in the Fall.  It’s all up in the air now, as we see how much and how long the chemo will run, and how intense it will be.  We’ll have to have a port put in (and you simply must click that link; Frances is amazing and brave and beautiful) and then start treatment.  But, again, we don’t know any of that yet for sure.  We’ll meet with her next week.  For now, we wait.

There’s a twist.

Are you wondering what the good news might be?

As it turns out, the surgical oncologist and medical oncologist are rethinking not just treatment, but diagnosis.  There’s a theory, which I’ll explain tomorrow, that suggests that this might not actually be metastasis of the inflammatory breast cancer, but in fact a whole new instance of (much more typical and treatable) invasive breast cancer.

Which means that we totally did the right thing by having surgery, and that there is hope, much more hope than if this were a metastasis.  Which means I’ve survived the two-year mark in which inflammatory breast cancer is most likely to recur.  Which means …

Oh, this is good news indeed.

And although I’m sore under the arm and tire easily, I feel lighter without the cancer in my body this week.  I am more energetic than last week, and not as sluggish as I was when I had to drag that cancer around and meet its energy needs as well.

I am hopeful.

If you read nothing else, read this:  I am hopeful.