All Is Well

My breast surgeon guarantees me that the little bump near my port-a-cath scar is not a tumor. That it is likely to be an undissolved stitch although scar tissue would also be a possibility.

Why would I suddenly feel it now? Perhaps because the rest of the area has softened and resolved enough to allow me to feel it. I did figure out, through endlessly prodding said lump over the weekend, that it can be flattened out. And that was a bit reassuring.

"But can't we just take it out? Biopsy it?" My pleas were ineffective.

No.

And he really did use the word guarantee. In addition, he assured me that he doesn't use that word lightly.

I have had complete confidence in him so far and his reputation is stellar. So I will go with the guarantee in spite of the fact that, I do NOT (and will not) watch-and-see. Ever.


I don't like the downward spiral that I went on over this. I'm not sure if I think that I acted like a baby, or if it was a reasonable fear. People live with recurrence, and I all but crumbled with the fear of recurrence. I think that I was done in by having two "what-ifs" in one month.

Conclusion: I still have lessons to learn.

Breathing Again

Not that anything of substance has changed since last night. But this morning I feel like I can breathe again. And that "it" is probably not cancer. And if "it" is cancer, then I will not allow it to spoil even one more day than is necessary.

I'm tempted to make myself a rule: no posting in the evening. St. John of the Cross's book is called Dark Night of the Soul for good reason, eh?

But such is this journey. Up and down. I can't always be the breezy Jayne who is thrilled with life, who has been taught well by the cancer experience, and so on. Sorry. (And just who am I apologizing to? I don't know. My husband, my mom and my closest IRL friends I guess. They bear the burden of when-I-am-not-so-fine.)

I am off to have a normal day, folks.

OK, So Now What?

Thoughts on Blogging

About a month ago, Lorelle on Wordpress did a post on Cancer Blogs and Blogging.


I discovered this post because my blog was listed, so that was kind of cool. Considering that Lorelle is not a "cancer blogger" she sure did manage to hit on one of the fundamental aspects of blogging about cancer. She writes: "If the disease ends, should the blogger keep blogging about being a 'victim' or 'patient'? Shouldn’t their blogging move on as their life has? What happens to the blog?"

It's a conundrum that so many of us face as we move further out from active treatment. Some of my favorite bloggers have all but stopped updating their blogs. I guess that's good - they're off living their post-cancer lives, right? But without any updates, I'm left to wonder how they are doing.

I know other cancer bloggers who have kept up their cancer blog but started another blog, too. I've thought about doing this (and I still might). But am I up for maintaining two blogs?

So I find myself at a bit of a blogging crossroads. I do still have plenty to say about breast cancer on this blog. Creative breast cancer projects come to my attention all the time, and I want to blog about them. Cancer continues to influence my own creative efforts, and I want to blog about that too.

Bad News

I am so so so so sorry to report that I have something sinister weighing on my mind again. On Wednesday, I found a little, hard lump right near my port-a-cath scar. It's tiny. Like smaller than a B-B. It could be scar tissue, but that scar is almost two years old. How likely is it that this would occur now? It hurts. If I push on it in a certain way, the pain is sharp. Almost like this little bump has a shard on it. I think that it would be unusual for a tumor to present pain in this manner.

It's not even on my cancer side. But... certainly there are lymph nodes in the area. It's just an inch or so below the collarbone. Maybe, despite a bilateral mastectomy, it is a new primary tumor. They can't get all of that breast tissue out, you know.

I had something happen to me a couple of weeks ago. It was related to the bleeding colon polyp that I dealt with last year. I had a few dark days. I had to go in for a test. The test came out fine. I didn't even write about it. I hardly even told any of my IRL (in real life) friends. Just didn't feel like dealing with it.

I had a pretty good run of it this past year. I've been able to play, work, travel. I've had days when cancer didn't even cross my mind.

Now?

Can't concentrate. Can't cope. Can't breathe. Appointment with breast surgeon on Monday.

I Caved

I've been having some pain around my ribs. My oncologist's office ordered up a bone scan for me to check for metastasis to the bones.

I decided to wait and let them call me. I was determined NOT to call the office and ask for my results.

This is what I told my friend:

"The old me would have been on the phone to the doctor's office the very next day asking for those results. But now, I look at it like this - what if it is bad news? I can't change it. Why would I want that bad news even one day sooner? Why not just enjoy as many days as possible believing that I am cancer-free?"




I made it four days & then I caved.

I called and asked for my results: all clear!!!!!!!!!!!!!!

I'm due back for another follow-up in December.

Oh and I also have to tell you: I am seriously loving my hair. I am 15 months post-chemo and my hair doesn't just look good it looks great. I really need to get some new pictures up. The one on the sidebar is quite outdated.

BC Shorthand

If the cancer was a wake-up call, this latest episode was a siren.

It is time for me to take a very serious look at my life, but not to take my life too seriously.

I have a lot to think about. What am I supposed to learn from this? What am I supposed to do with the experience? I thought that I knew. Now I think I need to bend my path again.

Big questions that deserve an answer, but this weekend I'm just going to savor

B9
B9
B9

And that at least for today I'm dancing with


NED


For those of you who don't have to spend time online at breast cancer message boards, we have our own shorthand to work with:

B9 is benign
NED is no evidence of disease

And in summary I am:

dx 3/2006, ILC Stage 1, neg nodes, Bilat, 4 Tax, Ooph, Er+/Pr-, AI

means that I was diagnosed March 2006 with Invasive Lobular Cancer at Stage 1 but my lymph nodes were clear. I had a bilateral mastectomy, four rounds of taxotere chemotherapy and an oophorectomy. My tumor was estrogen receptive but not progesterone receptive and I am currently taking Arimidex.

Great News: B9

I finally got my pathology report today and it was

All Good.
All Clear.

Just a benign skin cyst. Hooray Hooray Hooray.

My skin did not appreciate this little biopsy, apparently. Now I have a blister from the steri-strips and wouldn't the blister just have to be exactly on my scar line? Sigh. I'm sure it will go away...but does this ever really end?????????

Thank you all so much for your thoughts and prayers. It has been a trying week, and I'm totally exhausted right now.

Of course the biopsy weighed on me, and I did a lot of caregiving this week, too. I had sick children, took my mother for her routine colonoscopy (she's fine) and a terrrible cough of my own this week.

Note to Self

Someone who cares about me very much listened to me bawl yesterday and all but plan my funeral. She propped me up and scolded me at the same time by saying that "you are very intelligent and many wonderful things but you are NOT a doctor. " She made me promise to write myself this note and hold it in my pocket until I get my biopsy results:

"Dear Jayne,

You are not a surgeon, an oncologist, or a pathologist. Because you are not a trained doctor you don't know the different, multiple things that this bump could be.

You are taking good care of yourself by seeking prompt medical attention."

More Research

Local Recurrence risk after mastectomy is 1 %. Quite favorable, but of course someone has to fall into that 1%.

My little bump I am sorry to say fits enough of the symptoms of a local recurrence (red, positioned where the original tumor was located)that I am 50 / 50 on whether I think it is ominous or benign. My mind is trying to accept the idea that this is happening. I can't decide if it is irregular. It isn't hard.

If it is a true local recurrence, it isn't exactly a death sentence but it slashes my 10 year survival rate from 98% to 56%. Bad news.


Sometimes what at first seems to be a local recurrence is actually the first sign of metastasis. Worse news.

Fact: the waiting stinks.

Screw the Three Week Rule (and did I jinx myself?)

If I were superstitious:

I would think that I've jinxed myself with Overhauling the Blog and wanting to continue on with less-about-breast-cancer and more about being a survivor.

Because now I have a recurrence scare to deal with. A little red bump perfectly positioned between my lumpectomy scar and my mastectomy scar appeared about ten days ago.

I was sure that it would resolve itself; it seemed so inconsequential. I was going to abide by the three week rule: wait three weeks to see if bumps, pains, headaches, subside. If symptoms are still around for three weeks then maybe there is cause for concern. I didn't have the patience for three weeks and I'll admit that I've obsessed over said little red bump. So I went to see my breast surgeon yesterday. He is not particularly alarmed and was willing to take a wait position for a little while. I am not. Therefore, I am scheduled for a punch biopsy next week. Screw the three week rule.

If I were superstitious:

I would have deja vu. The last time I worked on a Big Fundraiser for the School I found a lump in my breast about a week before the event. I am currently working on a Big Fundraiser for the School. It takes place this weekend.

If I were superstitious:

My friend Amy gave me a beautiful healing necklace in the spring. It is a purple crystal on a silk thread. I've worn it a lot. I even wore it into my mastectomy; I was so used to having it on that I forgot to take it off going into the operating room. The nurse had to point out that I still had jewelry on and would need to remove the necklace. The silk string broke this week.

I am NOT superstitious, but come on!

As much as I'd like to avoid getting ahead of myself, I hunted around online and spoke to two nurses this morning. This is how I currently understand my situation :

Q. If there is a local recurrance to my breast and I've already had a mastectomy what can be done?

A. Radiation and maybe another round of chemo. It would have to be a different chemo regimen because obviously these cells didn't respond to the previous round.

Q. Does this constitute Stage IV?

A. Not necessarily. But if there was a local recurrence then new and additional scans would be in order.

Q. Can the pathology report differentiate bewteen a recurrence of the breast cancer and, say, an unrelated skin cancer?

A. Yes.