Thursday, July 15, 2010

Holding pattern

In the ten days since my last post I've seen and/or talked to several doctors. Bloodwork, scans and reports are being passed around between radiologists, oncologists and pulmonologists (that's alot of "gists" isn't it?)....and some decision will be made this week or next as to when I'll have the lung biopsy. I do know that they will try to do a guided needle aspiration type thing and sample the largest of my pulmonary nodules, but it is only 9mm, so if that doesn't work they have to go in a little more invasively, doing a procedure called VATS (video-assisted thorascopic surgery). Let's hope that is not necessary.

Meanwhile I am all over the map emotionally. I have good moments when I can actually put this aside and function almost normally, even laugh a little or enjoy myself somewhat. Then in the blink of an eye I can just as easily plummet down to the depths of despair.

It's just so hard to believe that this could be happening. Even more so because it has certainly been one thing after another for quite a while now, to an almost ridiculous point. For the last year, each time I went thru something difficult, like waiting for the diagnosis or trying to choose what type of surgery to have...facing the skin necrosis...enduring chemo...each time I would try and focus on a spot in the future when it would be over. But I have yet to get to that place, as my readers well know, because something else always seems to happen. When I'm done with one disaster I barely have a moment to take a breath before I'm trying to get thru another calamity, one day at a time.

I'd like to say that I've learned from this not to put life on hold, to live in the moment. And to some degree I suppose I have gotten a bit better at that. But these relentless issues each feel so acute that it's hard not to become all-consumed by them.

So here I am, nearing the one year anniversary of my mastectomy (7/27) and I don't feel in the least like I've been able to put any of this behind me, even a little. In fact, I think these unending medical issues have dramatically had the opposite effect, I've barely even scratched the surface of dealing emotionally with the fundamentals -- like that I have cancer in the first place, or that I "lost" a breast.

(You know, I am not all that fond of saying I lost my breast -- for one thing it sounds like I misplaced it and the thing could eventually turn up...and for another, I did have reconstruction and tho that didn't turn out as planned there's still a reasonable facsimile of a breast on my chest, albeit much the worse for wear.)


I'm holding on as best I can and some days, heck, some minutes, it's harder than others. Today as I read the numerous well-wishes on the comments of my last post I felt lighter, a little stronger. That's a HUGE blessing. To all of you who made that happen, my deepest gratitude. You've made so much of this saga more tolerable, no small feat, I assure you. Thank you.

Monday, July 5, 2010

Dodging bullets

I’ve read the last CT report myself now. It's not good. The original nodules “decreased in size and/or conspicuity compared to the last CT”. I take that to mean they might have decreased in size, or they may just be inconspicuous at the moment – like they could still be there exactly the same and are just not obvious this time around. But either way, the next part is what’s more important: “Bilateral pulmonary nodules, the majority of which were not present on the prior examination of 5/19/10, suspicious for (parenchymal) metastases.”

That word is on a report with my name on it -- metastases.

These new nodules came up quick…in less than 5 weeks. They have all appeared shortly after chemo, so despite all that poison pumped into my body they managed to develop.

I think I’m screwed.

From the day I first found the lumps there was a little part of me that thought I wasn’t going to live to be that ripe old age I once believed was a given. Yeah sure, everyone talks about how breast cancer is so treatable, that’s it’s practically a chronic disease. But that’s just media hype…it’s what people want to believe. And the idea certainly was that chemo would hopefully take care of any possibility for distant spread. Of course the truth they don’t want you to understand is that chemo only helps in about 30% of cases.

I guess it looks like I’m probably in that other 70%.

Once you have cancer you don’t take too much about life for granted. But still, I thought I’d have more disease-free time, you know? My fondest, most deepest wish was that I’d get to be around long enough so that Megan and Daniel would be grown up and on their own. But in my own mind, based on nothing scientific, I felt like it was a reasonable expectation to have 10 years. Okay, bare minimum was to have at least 5 solid then Daniel would be Megan’s age now and I think she understands what she needs to in order to get thru what comes next…as much as any child can. But this is all happening way sooner than I thought…my Danny is still a baby to me now…not even 4 yet. It’s too soon for things to start going bad. I realized yesterday that I’ve been dealing with this for half his little life, he doesn’t remember a cancer-free mom. I wanted him to have more of a life with me being well. Every time I look at him, at both of them, my heart shatters and I cry. They’ve seen too many tears. Meggie keeps saying she thinks it will be okay. That it wouldn’t be fair if it wasn’t. How do I explain to a barely 9 year old child that life isn’t always fair, in fact, it can be incredibly, cruelly unfair?

If this is a metastasis then it is also fast growing and it sure didn’t seem to be effected by chemo. All that poison and these things popped up anyway. So while there are women who still manage to live for a “decent” amount of time with metastatic breast cancer, if you ask me, these fast growing suckers don’t bode well for me being one of them.

I had the PET scan Friday. The tech was a nice woman, we chatted about this and that beforehand, we had a few things in common. After the scan I swear her demeanor changed, but like she was trying to make sure it didn’t seem that way. Just like the mammogram tech’s manner changed last year, and the subsequent ultrasound tech…and then finally the radiologist doing the biopsy. They all knew but couldn’t say. I think the woman yesterday knew too.

But then again, maybe I’m crazy. I want to be crazy.

I can’t tell you how hard this is. I keep searching for some hope, I keep trying to figure out a way that this is not happening. Maybe this is not happening. I don’t want this to be happening. I find myself begging, please, don’t let this be happening.

I would like to keep hoping but I’m afraid to set myself up for being emotionally annihilated. And in my quiet moments of pure thought, like the center of a storm, the way this looks now is if by some miracle it turns out not to be lung metastasis I will have dodged the biggest bullet of a lifetime.

Thursday, July 1, 2010

It's not looking so good

There is news, not definitive news but not good news. Here’s what I know:

The 2nd pulmonary doc received the written CT report yesterday but not the film disc itself – he won’t get that until today or tomorrow. The report says the original nodules may have decreased in size, but that there are now many new ones. He wants to review the films himself but he did suggest it looks like I might need a lung biopsy.

Saw my oncologist today – a woman who is usually the type that thinks nothing is wrong, quick to blow things off. She’s not blowing this off. She wants me to have a guided needle biopsy. The problem is there are so many nodules now and they are very small. However one of the new ones is 9mm and the radiologist she spoke to thinks he can get a sample. There are risks…like collapsed lungs and maybe permanent damage of some sort. I don't know about all that yet.

Oncologist also wants a PET scan, not so much to look at the nodules further but to see if there is anything in my bones, liver or brain. Bottom line is if the cancer already spread to those places there’s no point in doing a lung biopsy too. Save me from an invasive test since I’m going to die anyway.

What’s the treatment for lung metastasis? Oncologist says nothing more than I’m doing now…ovarian ablation and estrogen blocking drugs. Since the cancer would have spread while I was on chemotherapy there’s not much point in doing more. I wonder if that’s true or if there are other drugs…clinical trials, experimental things.

There is still a slight chance this is nothing more than an inflammatory response of some sort to something, but no one wants to wait and see anymore.

This doesn’t look good right now. I have a really bad feeling.

Yet I also keep thinking it can’t be happening. I can’t really be dying. Not so soon. Women with breast cancer that metastasizes to the lung don’t typically make it past five years. And who’s to say what kind of quality of life one has during that time. What if this is really it, the beginning of the end? How do I do this??? How do I leave my babies??? HOW?

Gotta stop for now, sorry. Will post when I can.