Well, I think it’s time to seek a second opinion. Now that the chips have fallen and I know the ultimate diagnosis, it’s time to bring in as many views as possible so that I can make an informed decision and feel confident about it. I’m not looking for the perfect situation or some elusive cure, not even saying I don’t have confidence in the medical professionals with whom I presently deal, but this is a pretty final diagnosis if there ever was one and I have to get the treatment right. I think it’s the responsible thing to do.
First thing, two yellow flags have been dropped about the lack of communication among by health care team. One was minor, a question on the part of my oncologist the first day that I met her as to why my surgeon wanted to see me after I spoke to her and not before. “I don’t know,” I said. “Ask him.” But the latest error concerns me enough that I’m losing confidence.
As far as the surgeon goes, I am as confident as I can be in this person’s background, experience, and opinion. Period. One of the top 1% in the country, I like his style and his reputation. And I want to stick with him. But I am concerned that he apparently did not inform my oncologist that he knew that I was Stage IV and has, in fact, seen the reports and talked to me. When I spoke to my oncologist I was glad that I could let her “off the hook,” so to speak, and tell her that I knew. But it was clear that she didn’t know that. And that seemed odd to me. She had been back from her vacation for an entire day before we spoke–what, no email? A voice mail? Nothing over the four business days (five if you count the weekend) in which she could have been informed of this knowledge? I find that odd.
So with that in my craw, my oncologist tells me that she’d like to get the lesion in my L4 vertebra and sacrum biopsied. “To make absolutely certain.” Here’s the deal: no one touches my lower back. It is the most pain-sensitive area in my body and there’s an eight inch scar from a laminectomy there to prove it. NO ENTRY.
Okay, she says, then she’d like to biopsy the suspicious lymph nodes in the chest. Well, I have suspicious nodes on my right axilla as well, let’s biopsy them again too because they were all negative. And, sure, while we’re at it, let’s biopsy my ass for shits and giggles. Oh, and a thoracic surgeon would need to do this.
What the hell? I get a PET/CT scan that confirms areas and now you want more biopsies “to make sure”? To make sure what? That I have cancer? I’ll be damned if I’m going to undergo an invasive procedure that requires general anesthesia to confirm that the subcarinal lymph nodes in my chest say that I have cancer or, very possibly, are as negative as the axillary nodes. Fuck it. I cancelled the appointment with the thoracic surgeon.
See, I’m a project manager. I know how you set the goal, identify the challenges, meet with the stakeholders, establish benchmarks, and manage the process through to the end goal. It’s what I do better than many people, and I don’t see that here. What I see is a patient being referred to other professionals, but each office an island of activity. And that is without any question unmistakably unequivocally undeniably unacceptable to me.
When I am told that “everyone here is totally vested in what you are going through” I need not only to believe that, but I need to see it in action. So I need to take even more time visiting more doctors just “to make sure” my treatment is being managed well. The fact that I have to police my physicians pisses me off. What’s next, I have to call semi-monthly project team meetings so that we’re all on the same page? I have to be a pit bull advocate for myself and stay as strong as a steel beam so I can get through this shit. And there’s the rub. There is no getting through this shit. It’s like luggage. And it doesn’t have wheels.
There’s no one else to be my advocate and fight for me when I’m just too overwhelmed or too tired or too sick. It’s just me. And I hate it.