Breaking up is hard to do (not really)

My oncologist has kept me alive. The past nine months have been the hardest months of my life and I’m glad she was there to guide me through some of it. But it’s time to move on.

I think she now sees me as a one of those “bad” patients. A patient with the audacity to question a doctor. I’m not questioning her, I just have questions, and sometimes there are no answers. She is an expert on cancer and I have nothing but respect for her knowledge, but I am an expert in me. I think a lot of doctors tend to forget this with their patients.

She asks questions about my health and then dismisses anything I report because it’s not life-threatening. Bloody nose? She tells me that the cancer isn’t in my brain and I should go see an ENT if it doesn’t stop. Eyelids swell? She says there is no cancer in my eyes and that it’s not like I’m going to die from puffy eyes. Joints are swollen? She says they’re not, even when I show her my rings don’t fit. I want to get blood work because I’ve been more fatigued? She refuses to order it because I was only “a little bit anemic” five months ago (!) when she last checked my blood counts. Left hand has pins and needles? She say it’s probably my spine, then she tells me I don’t have cancer in my spine. I never thought I had cancer in my spine, or my brain, or my eyes, but thanks, now the thoughts nag me. I still have all these side effects with no explanations.

She asks questions, but doesn’t really listen. and I can’t have a doctor that doesn’t listen, who’s only in it during the shit storm and then disappears when it gets real and perhaps boring for her.

Every question I ask seems to rub her the wrong way, as if I’m challenging her. I’ve said over an over that I am an investigator, a researcher. I read. I search. I want to learn. She says I should just stop worrying.

Six months ago she sent me off to get a mammogram because she was convinced there was a lump at my mastectomy scar. (No one EVER wants to hear that cancer is growing while actively getting chemo.) Turns out it was just scar tissue. I can’t help but think that if I reported having any of my current side effects six months ago she would have taken them more seriously. Now that I’m out of the woods, my side effects are suddenly meaningless to her.

The fact is thousands of women have the side effects I’m having. If she told me just once that, yes, she’s heard other women having some of these side effects, I’d feel a little better. But not once has she said it. I just don’t get it.

This isn’t technically a breakup because it’s a business relationship that we have. Well, if her business is saving my life, then I no longer need her services. Thanks. Looks like I’m going to live. But I’m not done with treatment, so I need a new doctor, one who sees her or his business as helping me to live as a whole person and not just as a patient whose life needs to be saved.

End result? I’m switching doctors. I’ll be finishing my treatment at our dinky sweet friendly small town oncology office, where I’m not just a number and not just a life to be saved, but a whole person. Let’s see how that goes.

 

 

 

 

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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.