Monthly Archives: October 2013

Two steps forward, one step back

It feels like I keep taking two steps forward, and one step back. I mean, maybe it’s one step forward, two steps back, but I like the first one better, because it’s less discouraging. So let’s call it that.

I found out this week that I have to discontinue one of my treatments, at least for a month. I described in my last post, Done., that although I’m done with chemo, I still am scheduled until July to take an antibody called Herceptin, which specifically targets the cells that create this overexpression of a certain protein that makes my cancer so aggressive. The great thing about this drug is that is has shown to be wildly effective in successfully beating the type of breast cancer that I have. So while it was scary to find out orignially that I have aggressive cancer, I felt lucky that it was this specific type (HER-2 positive), because that made it more treatable than others.

The bad thing about this drug is that in some people, it causes damage to the heart. This is what happened with me. A few weeks ago, I started feeling that I was becoming winded just too quickly, and sometimes felt some chest pressure. My doctor wanted me to go to the ER, and see if I had a blood clot in my lungs, so I did. They did a chest CT, and found nothing of concern, really. Well, maybe a suggestion of a little something, but since I was scheduled to have an echocardiogram the following week, my doctor just ordered some extra views to play it safe, but nothing to worry about. (At this news, I said, “Oh, great, so basically I just went to the ER to be told I’ve become fat and out-of-shape?? Super.”) Turns out, though, there is a decline in my heart functioning. Specifically, my left ventricle isn’t pumping like it should.

There are a few possibilities here (that I know of). The first is that because I had that really awful chemotherapy (Adriamycin) at the beginning of the process, the one that made me so sick, followed by the Herceptin (both of which are associated with damage to the heart muscle), then my heart is permanently damaged, and I will have to discontinue the Herceptin for good. The other is that, as sometimes happens, the cells in my heart are something my doctor called “stunned,” and just need a break from Herceptin, hopefully just a month. I like the second one better, because it allows me to continue with the standard treatment, associated with the most positive outcomes. So for now, I no longer take trips into the infusion room to get my dose of Herceptin. Instead, I take two blood pressure medications (even though I have very low blood pressure), in order to protect my heart. In a month, I will do a repeat echocardiogram, to see if it worked. Of course, this will be exactly one week after surgery, and will require me to lie on the side on which I am having my lymph nodes dissected (located at my left armpit), so I’m not super excited about that day, but I’ll gut through it, if it’s at all possible. I guess the other thing is that my surgeon is out of town, so she hasn’t weighed in on whether I can still have surgery as scheduled. I’m trying not to contemplate that possibility too much, because the consequences of leaving any residual cancer in there, untreated, sounds too scary right now. Plus, my medical oncologist (Dr. Scott) feels pretty confident that my surgeon won’t change the date.

So, should my heart not recover like Dr. Scott is predicting, I have to stop the Herceptin for good. Like I said before, this is scary to consider because instead of having the aggressive-yet-more-responsive-to-treatment type of cancer, I’m just left with… aggressive. However, we don’t actually know how little of this stuff you can get away with, and still have the same positive effects. In fact, there is a small Finnish study that indicates that getting nine weeks of Herceptin is as effective as a full year. Of course it’s a small study, and it’s just one study, but I’ve had 13 weeks of the stuff, so I’m trying to find hope in that.

I can’t help but be reminded that I have been talking a lot about how happy and proud I was that I got through all of my chemo without having to stop. Kinda feels like the Universe is telling me to Calm the Hell Down, not get too cocky. If that’s how we’re playing this, Universe, I would like to publicly retract all conversations I’ve had recently in which I’ve expressed surprise at what a quick healer I am, and how I’ve found all of my surgical procedures to be less painful and uncomfortable than I anticipated. I’ve ended all of these conversations with a (perhaps foolish) prediction/hope that my double mastectomy might not be as bad as I’m anticipating. In preparation for this huge surgery in a week and a half, I would like the Universe to hear that I recognize it could be very, very difficult.

For my part in this, I will work out my heart muscle every day, regardless of how tired I feel (I mean, until surgery). And hope. Hope that in about a month, that repeat echo shows that my heart has regained it’s original level of functioning, allowing me to restart my Herceptin treatments, and therefore be more confident that I am marching toward a cure.

Done.

Done. Done. Done done done done. Done done. Done. Done done done. Done. Done. Done. Done. Done done done done. Done done. Done. Done done done. Done done done. Done done. Done. Done done done. Done. Done. Done done done done. Done done. Done. Done done done. Done. Done. Done done. Done.

Well, kinda.

I had my last chemotherapy treatment on Thursday. My Last One. I’m trying to let that sink in, and feel the wonderfulness of it, but right now, I feel 20 weeks of chemicals and steroids coursing through my body. So while I am DONE with chemotherapy, it’s not quite done with me yet. And this last one was a doozy. If I didn’t know better, I’d think maybe they gave me a triple shot of the stuff. As it was, my doctor informed me that many people who get this treatment don’t make it through their full 12 weeks before their bodies can’t take it anymore. By week 8 or 9, they have to start trying other drugs. I can see why. It sort of feels like I got all 20 weeks, both drug combinations, in one last hurrah, just to give it that final kick. And with the last dose, I feel a return of almost all of the side effects, even those from the first eight weeks, when I was on a different drug combination: weird vision changes, heightened senses, queasiness, tingling feet, itchy hands, extreme fatigue, dehydration despite my best efforts, dizziness, agitation, inability to concentrate, extreme emotions, and other stuff I’m not recognizing because crappy is the new normal. So I can see why others don’t make it to the last dose of this combo, and I’m so thankful that I did. Because my other option was trying a new drug, and the new side effects that come along with it, instead of the ones that I know. And, worse yet, that other option meant suffering through those new side effects, knowing I’m only getting the second choice, or third choice of treatments, and worrying that it isn’t good enough, that it won’t work. I’m not sure I could have handled that.

So while I’m feeling like I’ve been hit by a semi right now, and can’t really celebrate being done, I am trying to recognize the smaller milestones that come with being done. I had my last Night Before Chemo, in which I lie awake and dread. I had my last Day of Chemo, watching the chemicals drip into my veins, noticing my body feel increasingly buzzy and poisoned and weak as the hour goes on, feeling my energy slowly drain. My last dose of steroids… ahh.. that’s a big one. I mean, literally, since I took an extra dose to help with the itching this week, but knowing it is my last? That’s a gift. So that means maybe my swelling has finally hit its peak. And my emotions can return to my regular baseline. Mostly, it means that I never again have to walk through the night after chemo, and day after that, in which I can’t sleep but am ridiculously tired. And Everything feels catastrophic and so incredibly sad. And I lash out at the people around me. And the lashing out makes me feel lonely and guilty, because I’ve pushed people away who are only wanting to be there for me, but they Just Can’t Know How This Feels. I don’t have to do that again.

And as I’m experiencing my side effects, I can tell myself that right now is the worst I’m going to feel. I haven’t been able to say that in 20 weeks. Almost 5 months. 20 weeks of always knowing I could feel worse at any time, even when worse is unimaginable. 20 weeks in which I went from wondering when it would finally sink in, when I would know what it really felt like to have cancer, to not really remembering what it’s like not to have cancer, and to wonder if I’ll ever feel healthy and energetic again. (Okay, let’s be real, I’ve never actually been known for having an abundance of energy, but it’s all relative, right?) But I can say that now. I can say that tomorrow might be better, and in a week I might feel pretty good, and in two weeks, I might be rejoicing in how normal I feel. That’s a realistic thing to say.

And just thinking that, just writing it and sharing it, that is such a gift. Such a wave of relief. I am getting myself back, starting now.

Frequently Asked Questions

*Disclaimer: This title may be misleading. It should probably read, “Questions I’ve been asked at least once, and/or feel like answering today.” But that just didn’t have the same flow*

You’re almost done with chemo! Does that feel great??!!?
No. And not because I want to keep heading into the infusion room with my fellow baldies to have chemicals pumped into my veins. It’s that although it sounds to everyone else like I’m almost done (well, because I am almost done), it doesn’t feel that way to me. It feels like I’ve run most of a marathon, but still have the last mile left, and it’s uphill. Not that I’ve ever run a marathon, or even a 5K, but my sister has, and she describes that last mile like that. Or maybe it feels like I’ve been run over by a series of trains, and there is still one left, only it’s the longest one. The effects of the cocktail of drugs I’m currently on are cumulative, and I’m just. So. Tired. And cranky. And emotional. And beat up. And swollen from the steroids they give me to prevent an allergic reaction (which only kind of work, because I still have bouts of incredible, mind-numbing itching on my hands and arms that sometimes bring me to tears, and makes me look like I’m on meth. Except without the energy of a meth user).

Also, to be precise, even though next week is my last dose of chemotherapy, I still have to take a trip to the infusion room every three weeks for 9 more months. One of the drugs I’m getting, Herceptin, has the highest success rate if given for a year, and I’ve only put in three months. Herceptin isn’t a chemotherapy, in that it doesn’t attack my healthy cells. Only the cells that create the over-abundance of this certain protein that makes my cancer so aggressive. The good news of that is that the side effects of Herceptin are minimal. I mean, except for possible heart damage. No big deal, right?

The other reason I’m not feeling great about being almost done with chemo, is that the next step is surgery. I’m not looking forward to that. Mostly, I’m not looking forward to how I’ll feel after surgery, both physically and emotionally.

So, after chemo, are you done with treatment?
Nope. On November 11th, I am scheduled to have a double mastectomy. My surgeon will also dissect the axillary lymph nodes on my left side, because she found cancer in two of my lymph nodes during the last surgery. So she will want to make sure it hasn’t spread. Once I am healed enough from that (probably about six weeks), I will get radiation every weekday for six weeks. Maybe five. It depends on how much cancer is found during surgery. Once I have healed enough from that, (probably at least six months) I will start reconstructive surgery, which consists of four procedures. Unless I change my mind about that.

I heard people who have lost their hair to chemo often find it grows back differently. Maybe yours will grow back black and curly?
Actually, (for those who don’t see me regularly) it’s already starting to grow back, foiling my plan to start a betting pool on possible textures and colors. Every day there is more hair, and it’s pretty clear it’s going to be be red again (YES!). The jury is still out as to whether it will be curly (fingers crossed!). Although, I should be careful what I wish for. With my lack of skill, or interest, in how to style hair, it would probably be a disaster. In my head, I could look like this, if I just had curly hair:

in my head

But, let’s be real. I would probably look more like this:

reality

I would post a picture of the how it actually looks right now, if my face weren’t swollen up like a pumpkin. Or if it didn’t look as if I might have a receding hairline, and the hair on the lump at the top of my head might not be growing as thick or as dark as the hair around it, therefore accentuating said lump. No good comes from sharing pictures of yourself like that.

How’s Miko?

Miko is her usual confident, chatty self. She has a big role in a play today, in which she sings a solo, and doesn’t appear to be one bit nervous. Unimaginably, she’s turning 11 on Sunday. 11. When I started grad school, she was in the first grade, almost seven. Now she is a tween, and wants to celebrate her birthday weekend by making an egg recipe she found online from Gordon Ramsay. Love that kid.