Tag Archives: Herceptin

Uncertainty

It’s interesting. Having cancer isn’t what you think it is. Or anyway, having cancer isn’t what I thought it would be. I had it pictured as this melodramatic Lifetime movie, the big pieces of bad news being the hardest, followed by copious amounts of sobbing. In reality, I’m usually just too numb to really react to the big news. Numb, and mentally diving into whatever solution is being proposed. So those parts haven’t been the hardest parts, not really. The hardest parts are the chronic, low level, gnawing parts, like the month-long irritation across my chest, which isn’t bad enough to medicate, but just makes me grumpy and serves as a reminder that I’m still sick. Or the being tired all of the time, watching wistfully as my friends engage in fun, active activities. Or the waiting. And the uncertainty. You’d think I would be well-practiced at handling uncertainty by now, but I’m still pretty lousy at it. And unfortunately, things just seem to be getting more uncertain, not less.

In Two steps forward, one step back,  I talked about the damage done to my heart by both my chemotherapy, and the antibody I was taking, the one that made treatment so promising. But I was pretty hopeful, because this damage wasn’t all that uncommon, and in most cases the heart regains its functioning within a month or two. So we were waiting another month to have another echocardiogram, to make sure my heart function had bounced back before we resumed treatment. Only mine didn’t. From what I understand, a healthy heart ejects between 55 and 70ish % of its blood with every beat. Before and during all but the end of my treatment, mine ejected about 65%. Now, it ejects about 42%, and isn’t improving. According to my oncologist, that means the the treatment is just too risky for me to try again.

The good news is that we don’t really know how much of this treatment (Herceptin) is enough. It’s possible what I’ve had is sufficient. And I still can get my radiation therapy and hormone therapy. Also, it’s possible I’m cancer-free, right? So maybe I don’t even need it.

But maybe I do, and that is what is wearing me down. That nagging voice, which is saying, “You aren’t getting the first-line treatment anymore. That could matter.” Or, “You might have a damaged heart forever.” That, and how it complicates other parts of my treatment. My left ventricle, the part of my heart that is damaged, is in the way of my targeted radiation treatment. Doing conventional radiation could further damage my heart. So my radiation oncologist wants to do a more specialized form of radiation called IMRT, in which he sends the beam around my heart. Of course, he anticipated a battle with the insurance company, which delayed my treatment. Luckily, my nurse case manager got on the case (have I said lately how much I love nurses?), and made the approval happen in record time. But still, just the ups and downs and uncertainty of the whole process left me feeling drained, and at the mercy of other forces. Out of control. I don’t do well with Out of Control.

Fortunately for me, this emotional rut comes at the best time. I’m not a particularly religious person, but I do find Christmas to be as close to religion as I normally get. The act of everyone coming together, regardless of the hassle, just to be with one another and walk through our traditions, makes me feel a part of something bigger. My family makes a three-day extravaganza out of it, and there are a few moments every year that define Christmas for me. The first comes while driving on Christmas Eve to wherever I’m sleeping. Hopefully it’s foggy, certainly it’s dark, and there’s always something mystical about the chilly air. I feel bathed in happy anticipation, content to be spending time with as much of my family as could make the trip. The second comes on Christmas Day, while we’re opening presents. Say what you want about the dangers of consumerism (and I’ll usually join you), but there is something about everyone giving to everyone else that I love. Every year, there is at least one gift that takes the collective family’s breath away. In our family, it isn’t because it is the flashiest gift, or the most expensive one, but because it makes the receiver feel known.  That moment, when I’m watching someone open up a gift, and I can just see that look on his or her face that says, “Oh. They get me.” is such a powerful moment for me, and always chokes me up. Because what is a better feeling than feeling truly known? One year it happened when my sweet nephew made his dad, my brother Mike, a stuffed fish with a red mustache. Anyone who knew Mike will understand why this was perfect (ok, he was a fish broker, was known for his signature pushbroom mustache, and was one in a family of redheads). Another year it happened when my sister gave her mother-in-law, Linda, a picture of her son, my sister’s husband. This was so poignant because just a few months earlier, Linda had suddenly and tragically lost her other son. There isn’t anything that Linda loves more than her boys, and so there wasn’t a dry eye in the house. The last moment comes usually on the 26th or so, when we have our annual Christmas party for the extended family (or as I like to call it, Cousin Day!!!!) and I look around, appreciate all the familiarity, take in the changes the year has made, and bask in cousin love. This year Cousin Day will be made even more special, because my friends, Renee and Luke, are brave enough to join us.

All three of these moments will be different this year, because none will include my brother Mike, except in memory. We will all be so aware of this, because Mike was such a large presence at Christmas. But we will have each other, and we will all have our own moments, which I am certain we will cling to more tightly due to the hardness of this year. And these moments, they will give me the comfort I need to face the continued uncertainty that awaits me.

Good news/bad news

First off, I want to thank everyone for the mountain of well-wishes and sweetness I’ve received. From people who don’t know me but found my blog, to family members who waited in the waiting room or by the phone, and everyone in between, I’ve been humbled and overwhelmed by all of the messages of hope that were sent my way. That had to have helped. At the very least, it made me feel loved during a time in which I needed a little love.

The first few days were pretty intense, and are very blurry in my memory. I woke up groggy and numb, but aware enough to recognize an old neighbor among the many nurses milling about the post-op room. (What a nice surprise!) For the most part, the hospital staff was all very helpful and professional. I will say that my first floor nurse was a little socially inept. Once finding out I was a psychologist-in-training, she wanted to have an in-depth conversation with me about helping her friend through the grieving process (mere hours after my surgery), and at 2AM tried to insist that we sing my favorite song. When I wouldn’t, she proceeded to pick “Hakuna Matata” from the Lion King to sing for the rest of her shift, trying to get me to join in. That’s when I pressed the morphine drip for some extra help with coping.

The drains coming out of my body having been the hardest part. They are uncomfortable and always in the way, besides just being disgusting. My hope is that I’ll get most (ok, if we’re taking hopes, I’ll go for all) of them removed this next Tuesday at my post-op appointment. My surgeon said the chances of having them all removed at 2 weeks post-op is remote, but I’m hoping anyway. I’m not super looking forward to the act of having them pulled, but I can’t wait to have them gone. All in all, though, my recovery hasn’t been all that painful. For the last few days, I’ve only used my painkillers at night. I’m a little more active each day. Key word here is little; today my big activity, which wore me out, was a 5 block walk. Every day, though, feels a little easier, and I feel a little closer to myself. So far even emotionally I feel just fine. The trick now is not to overdo it — I’m supposed to be restricting my arm movements as much as possible at this point, and that’s hard to remember sometimes. However, this is absolutely made easier by my sweet family. My mom and sister have both taken their turns staying with me and waiting on me hand and foot, and Brian has become an expert in caring for my drains while minimizing the pain.

So, since surgery, I’ve gotten both good news and bad news. I’ll start with the bad news, because I think the good news is bigger and more important.

In my post Two steps forward, one step back, I talked about how my heart had been damaged by the treatment I had been getting. The hope was that my heart muscle would strengthen within a month, and I could resume my treatment the week after surgery. On Monday, I went in for an echocardiogram to see if that had happened. It hasn’t yet. My oncologist got me in to see a cardiologist right away, but turns out there was a good reason why he had an opening the next day; he was quite possibly the worst doctor I have ever seen. He came in wearing a track suit (I will readily admit that I might have found this endearing had I liked him), rarely made eye contact, interrupted me every time I spoke even if I was answering his questions, and questioned every piece of my (very standard) treatment plan, including the fact that I’ve gotten both a lumpectomy and a mastectomy. He also admitted to me that he knew really nothing about cardiomyopathy that is caused by chemotherapy except what he had read that morning, and that he hadn’t read much. He then went on to tell me that (despite admittedly being ignorant on the subject), I would clearly be foolish to continue with any of my treatment plan, including radiation, and if I did I wouldn’t last twenty years. He did a lot of derisive head shaking and very little listening. I wasn’t impressed, and won’t go back.

So my oncologist and I have come up with another plan. We will give my heart another month to recover. I feel good about this, since during this month, my heart won’t have to undergo a major surgery like it did the last. In the meantime, we will find and schedule an appointment with a cardiologist who specializes (or at the very least is familiar with) chemotherapy-induced cardiomyopathy. This will likely be in Spokane or Seattle, since Missoula doctors need to be a little more generalized. If my heart doesn’t “bounce back” within a month, I’ll see the specialist. If it does, I can cancel if I like. I’m pretty confident we can figure this out, and that this is just another hiccup in an otherwise pretty smooth process. From the (somewhat limited) research I’ve done, this isn’t a rare hiccup in my specific treatment plan, which, like I said, is the standard treatment for the type of breast cancer I have.

Okay, now for the good news. Remember how I was lamenting that some stranger was going to dissect my breast tissue for evidence of disease? Turns out, that stranger is my new BFF. My surgeon called me late last week and told me that they found a little bit of DCIS hiding out in the ducts. That’s not a surprise — we knew we hadn’t gotten it all during my first surgery, and while DCIS is localized and practically precancer, it also isn’t very receptive to chemotherapy. But so, it’s fine that it was there, because it’s gone now, due to my mastectomy. In the right breast, there was nothing but benign tumors. In the lymph nodes? Nothing. Remember that two of my lymph nodes were positive for cancer before, so there was this potential it could have spread throughout my body? Well, it doesn’t look like it did. It looks like all of those months of chemotherapy, all the nausea, all the fatigue, all the irritation and terrible itching…. those months were worth it. They did their job. And because the DCIS that was found has been removed… it’s possible I’m cancer free right now. We still plan to do radiation, in case there’s some undetected rogue cells somewhere, and because that’s part of the treatment that’s associated with the most positive outcomes, but it’s possible I have no undectected, rogue cells. It’s possible I’m sitting here, typing, for the first time in who-knows-how-long, without a trace of cancer in my body.

And that’s worth all of it.

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.

Tuesday is coming.

The purpose of discussion boards is largely to give people who need support on a given topic a community that might be hard to get otherwise. Right? This is what I’m telling myself after making the tactical error of “educating myself” by visiting discussion boards for people who are receiving the same chemotherapy regimen that I’m starting Tuesday. Tomorrow. I wasn’t comforted.

All along, I’ve been concentrating on the regimen I just finished, because that was what was at hand. This next phase I categorized in my head vaguely, as the description my doctor initially gave me: “less intense.” But as Tuesday drew closer, I started to get curious. How do people feel? Do they just feel normal? I know some people experience peripheral neuropathy, or tingling in the hands and feet, but how common is that? Do they feel anything else? Maybe I should just go online and see what other patients have to say… maybe I’ll find out most people thought it was pretty easy?

But people who are having an easy time with a treatment, or anything for that matter, don’t generally feel the need to find others in similar situations. They don’t need to reach out. They don’t have the same needs of community and commiseration. They don’t go online and say, “Hey, I’m concerned because I’m feeling so normal… anyone else out there feeling like that?” So what I found was more like worst-case scenarios. I hope. These people experienced things like chronic bone pain (both achinesss and random, shooting pains), continued hair loss (not much left to lose), constant watering of the eyes and nose, nose bleeds, fingernail and toenail loss (this really grosses me out), loss of feeling in the hands and feet, severe fatigue, general “yuckiness,” heart failure. So, not super fun. And the treatment is weekly for 12 weeks, apparently getting worse as time goes on. By then, summer is over, the weather has changed, the semester is half over. It’s a lot to think about. To worry about. To dread, causing me to see Tuesday as this scary unknown that is coming for me.

Tomorrow also would have been my brother’s 55th birthday. A big one. I was feeling really down about commemorating it by sitting in the chemo chair. Then, my clinical supervisor suggested that I think of it as honoring his memory by caring for myself, getting the treatment I need. And really, that is particularly appropriate for this regimen. One of the drugs I will be getting specifically targets the type of breast cancer I have. Apparently, my cancer makes an excess of a protein called HER2. This, in turn, makes my cancer more aggressive. The drug, Herceptin, goes after only the cells that create that protein. So it feels more strategic than the other, less discriminatory drugs I get. The ones that go after all of my cells.

So, I will take my supervisor’s advice and sit in that chair in honor of Mike tomorrow. I will hope that I will be one who doesn’t need a discussion board because my symptoms get so bad. And mostly, I will believe that the Herceptin (and the other one, the Taxol), will do everything we’re intending, and that 20 years from now when I’m thinking about Mike on his birthday, I’ll be cancer-free, with a glass of wine and not chemotherapy.