Blame

I remember exactly one thing from high school psychology class, and that is Kubler-Ross’s stages of grief. Ok, I should clarify – I remember that there are stages of grief, and I’m pretty sure that anger and denial are two of them. Also I remember them as Kubla Khan’s stages of grief. But I digress.

The way I remember it, blame is a stage of grief; but it isn’t, according to Kubler-Ross. Yet, I am pretty sure I have been grieving over the past couple of weeks, and I have to acknowledge that what I have been spending my time doing lately is blame, blame, blame. It explains why I spend hours – HOURS – each day reading the same reports from my medical records over and over again, looking for what someone missed in 2013. It explains why I spend even more hours reading dense medical research. It explains why I have probably only spent about ten minutes crying or feeling real sadness about this (although my daily Effexor + Klonipin cocktail explains that, too).

But back to blame: I continue to be convinced that because of the kind of DCIS I had in 2013 (ER/PR+, grade 3, comedonecrosis), that in addition to the mastectomy I had, I should also have had hormone therapy (Komen) and/or possibly radiation therapy (Collins et al). Studies are also out there that say neither of these are necessary after mastectomy, so I can also see why my doctors would not have prescribed either.

But that hasn’t stopped me from blaming them anyway. One thing I’ve always thought was a bit strange is that my plastic surgeon’s name is on the pathology orders from 2013, not the surgical oncologist. He and I have always had a nice relationship, and he is fantastic at responding to email, so I sent him a message last night asking him if he could tell through the computer if the surgical oncologist who did my mastectomy (who has now left the state) had ever looked at the pathology. I thought there might be a sort of “check in, check out” system where they could see everyone who has looked at an electronic record. He first said he was really sorry to hear my cancer had returned; he also said he could not tell who had looked at the record, and he explained a bit why his name is on it (because the OR was booked in his name, not hers). Sensing a bit defensiveness in the explanation, I wanted to assure him that I was only curious if the oncologist would have been alerted to the availability of the pathology results. After a few emails back and forth (during which he responded almost immediately), I finally explained what I was really looking for):

I guess I am wondering if Dr. Ahrendt might not have seen the pathology because it was in your name (not at all saying that’s your fault – she should have been looking for it, and for all I know, she did see it and thought the mastectomy was enough treatment). But I don’t think she did see it, nor did any oncologist ever see that pathology. If they had, I am almost certain I would have been given Tamoxifen at the least and possibly even radiation (ER/PR+ grade 3 DCIS w/BRCA2 mutation — even with mastectomy, I have read in a ton of research studies – there is usually more treatment). I mean, I could still have ended up where I am now. I just can’t help but wonder….. it’s a lot to have gone through to end up with cancer anyway, so I guess I’m trying to figure out how this happened.

Aaaaaaaaand, thus is the end of my relationship with my plastic surgeon. He did not respond to this email. I mean, I don’t blame him. Here I am, essentially accusing one of his colleagues of a major fuck up. Even if he believes it didn’t happen, he can’t respond to my email without possibly implicating himself. And, if I were to sue (which, as I explained to my cousin, I only plan to do if my diagnosis is terminal – I’m not leaving this earth without ensuring that my husband and son have billions of dollars from the hospital that left me for dead), these emails would most certainly come into evidence. I do hope he’ll operate on me should I need him this time around, but I suspect he might be less than agreeable to working with someone who is this suspicious.

Of course, I don’t only blame the doctors. I blame myself… a lot. After my 2013 hysterectomy/oophorectomy, my mood swings became completely unbearable to myself and others, I began to take hormone replacement therapy, knowing full well that it can increase the risk breast cancer. In order to avoid this, I took an extremely low dose for a bit less than two years, up until I turned 40 years old when my gynecologist explained I would (had I not had the surgery) begun to lose the natural estrogen in my body anyway. I weaned off before that point and switched my antidepressant to Effexor, which is often prescribed off-label to manage menopause symptoms. Given that my current cancer is ER/PR+, it seems pretty obvious that the HRT could have contributed to its development.

I also blame my lifestyle choices. While there is no science linking healthy eating or exercise to cancer prevention, of course I can’t help but wonder if I treated my body better, would this have happened? There is science linking high BMI to breast cancer; my BMI is currently 33.8. This means I am “obese” – not as bad as I was about a year ago, technically “morbidly obese.” My BMI has been in this area (or higher) for the last 20 years or so. Has this extra weight, putting pressure on all of my joints, bones, muscles, and organs, possibly down to the cellular level, caused this cancer to develop? Definitely possible.

Kubler-Ross would say that blame is part of anger (one of the actual stages of grief) and/or negotiation (another one). I don’t quite feel angry – while I am intellectually angry (that is, I know I am angry, I think angry thoughts, yet I don’t feel like screaming or yelling – most likely a symptom of the cocktail of Effexor and Klonipin that tends to keep me rather emotion free). Maybe it doesn’t really matter what stage blame is. My therapist, who I saw this afternoon, says I’m allowed to feel whatever emotions I want about this, and I shouldn’t worry if they’re healthy or productive or what category they fit into right now.

I also learned something new about Kubler-Ross’s stages of grief (well, I probably learned this in high school psych, but I didn’t remember it). I’d always thought, apparently as most people do, that these are stages people go through after experiencing the loss of a loved one. But really, they were intended to:

describe the process patients go through as they come to terms with their terminal illnesses… only later applied to grieving friends and family members, who seemed to undergo a similar process after the loss of their loved ones (psychologytoday.com).

I don’t know yet if this specific cancer is terminal. Having a BRCA mutation means I’ve always thought that cancer would kill me at some point; I’m not necessarily thinking it will be now, but eventually….. And that’s what I blame the most – I blame this fucking gene: its control over my life, the way it gets to decide what happens to me and my family members, the way it fucks with my head so that whenever I have the slightest pain in my body, I think it’s back; that every time I think I have done something to control it, it laughs back in my face to say “nope, fooled you again.” So, BRCA gets the brunt of my blame, the backhanded slap, the big ole Fuck You. And in terms of Kubler-Ross’s stages, I’m not in any rush to leave anger right now.