Life after chemo

My last bad chemo was Wednesday (taxotere and carboplatin), and I find myself reflecting and wondering, What does this all mean? Where am I going next? It would be easy to disappear back down the path into “normal” life, but I choose not to.

It’s common for cancer patients to get depressed and disillusioned when their chemotherapy regimen has ended, and it makes sense when you think about it. For the last 18 weeks I’ve had continuous contact with nurses and doctors who monitored my health. In some ways getting chemo is sickly comforting – it’s supposed to be destroying cells that want to destroy my body. And now I’m not getting it anymore. The security net of chemo has been taken away. Now I get to free fall and figure out recovery on my own.

You can see the chemo on my fingernails like growth rings on a tree, except it’s not growth, it’s destruction. If you look closely you can see six ridges on my thumb nails from the six chemo treatments. Interruptions in my cell growth. My anti-growth rings. One by one the ridges will disappear over time as my healthy cells take back my body.

With chemo out of the picture I am getting a glimpse of where I’m headed, but I’m also looking in the rear view mirror. Everything has happened so quickly and I really haven’t had time to grieve the loss of my breast and five months of my life. Chaotic doesn’t even begin to describe how the last five months have been. When I take a hard look, the chaos has been around a lot longer than that; it’s been more like two years. Cancer shoved that chaos over the edge adding in a big dose of terror and mortality.

It feels like I’m going backwards, something I don’t really ever do, but I have to if I’m going to process all of this in a healthy way. I have to back up to my mastectomy and take on those feelings. I have to figure out what this all means for me and where I am going next. Backwards is the new forward.

One bad chemo left. Will I get radiation?

RadioactiveSymbolTime sure does fly when you’re not having much fun. I can’t believe that I only have one bad chemo treatment left, February 10. It’s going to be the end of a chapter in the Cancer Book for me.

But my story doesn’t end there, that’s for sure. Everything has changed and my post-chemo life will begin to show itself. I will still have nine more months of Herceptin, a targeted chemotherapy, but it will be nothing compared to how six rounds of Carboplatin and Taxotere have wreaked complete havoc on my body.

I’m meeting with a Radiation Oncologist next week, and I have to admit I am hesitant to get radiation. I just got my ass kicked from chemo; I’m not too willing to rush into radiation. The kitchen sink seems to get thrown at cancer, but in some cases there’s not enough information out there to tell us what really works and what doesn’t.

I had two positive lymph nodes which is a gray area for radiation. Long-term radiation studies have focused on people with four positive nodes or more. I’ve also done a lot of research on radiation therapy and found out that, yes, radiation can kick your ass in, too. It can fatigue you, burn your skin, change the texture of your skin, cause skin pigment changes, increase your risk of lymphedema (swelling), cause a secondary cancer, increase risk of heart and lung damage (especially if it’s on the left side, which mine would be), and you can only treat an area once time in your lifetime.

I feel like my left side is already severely compromised. I can’t feel most of it, and there is a lot of scar tissue that has been changing and evolving since the mastectomy. I am still getting to know this part of my body again. At my check up this week my breast surgeon told me the actual scar tissue on my chest is the size of a dinner plate, because that’s what was left gaping open when the breast tissue was removed before the skin was pulled together. So what looks like a ten-inch line scar is actually a ten-inches in diameter round area of scar tissue. That’s huge, and it’s still healing.

So far each doctor has deferred to the next. The Breast Diagnostic Doctor: Whatever the surgeon days, do. The Breast Surgeon: Whatever the oncologist says, do. The Oncologist: Whatever the radiation oncologist says, do. I don’t know, my gut says don’t. And who knows, maybe the Radiation Oncologist will see no need to treat it.

All I know is that if radiation is recommended, it is going to be a hard sell. Since the Herceptin is supposed to be a nail in this cancer’s coffin, I’m going to need to see some serious data showing that the benefits of radiation will outweigh the side effects.

 

 

 

There are no wrong questions with cancer

My numbers are in a healthier range this week. Just in time to get another whack of chemo. This time they dropped my doses by 20% for both the Taxotere and Carboplatin.  (I have a new tagline for Taxotere: “Taxotere, putting the tax on your liver since 1996.”)

When you are getting chemo, your liver can have an indirect effect on keeping your white blood cells, monocytes and neutrophils at a healthy level. Some of my liver numbers are high (AST, ALT) which means it is taxed and having a hard time breaking down the chemo. It also means that the chemo from three weeks ago is still in my body, hence the low blood cell counts. Lowering the doses should give my liver a chance to rebound.

I’ve said this before, but you need to be an expert in your own cancer. You have to have a doctor’s mind, do your research, learn how to read your pathology reports and blood test results. Ask questions, lots of them. There are no wrong questions. This is not a time to stick your head in the sand. Be the squeaky goddamn wheel if you need to be.

Last week at chemo, the nurse was not going to take blood for a CBC panel. That’s what tells you your neutrophil, monocyte, and white blood cell counts. Since the week before they told me I was neutropenic, I wanted to know where those numbers were. The nurse flat-out said no. This has been the first and only time I felt not listened to and had to argue to get my needs met. I challenged the nurse. She didn’t like it, but she requested the blood work, and guess what? I had zero neutrophils, kind of important to know. So push, fellow cancer sisters and brothers, push.