I’ve known too many of these in the last three months since my diagnosis. Terrible days are to be expected — it is part of the nature of what’s going on. Notice I said part. But several of these terrible days could have — and should have — been avoided. I hope any unnecessary future ones will be. I’m trying to figure out how to make that happen.
It boils down to this: I am in awe of the world of medicine while simultaneously, I’m horrified by it.
I’m in awe because, as I’ve mentioned before, the three chemotherapy drugs that I’m on right now that are likely saving my life — Carboplatin, Gemzar and the PARP Inhibitor, did not exist in 2006, when I was first diagnosed with Breast Cancer. Kudos to my oncologist, Dr. Dana Zakalik, for her role in bringing the PARP to Royal Oak Beaumont Hospital as this drug seems to be showing great promise. I’ve also noted in this blog how much I appreciate the people who got me through the testing phase with lightning speed so that my type of cancer (Stage 4, Triple Negative), could be identified as quickly as possible and I could begin treatment. I was diagnosed on Jan. 12 and by Feb. 1, my chemo regimen had begun.
I’m horrified because I can’t get over what I’m calling the “loose lips” practices of medical personnel on the same team who seem not to coordinate their findings, methods, treatments, or prognoses of their patients — one of those patients, of course, being me.
You know the story of what happened during my lung biopsy, as I blogged March 29, titled, “A Little More Bedside Manner, Please.” Then there was the completely unexpected delivery of my PET Scan results — I found out I was in Stage 4 breast cancer when I thought I was coming in for a simple surgical consult. I would have liked my husband to have been by my side when I learned that news. But poor communication between the medical staff and me, the patient, gave this part of my story a totally different, harrowing, and unacceptable ending — including me, hysterical, caught in a traffic jam trying to reach my husband, who was home, waiting for me, waiting to hear the specifics of the news that put me into hysterics in the first place.
Then there’s yesterday, which started off as the final “off” day for me before Round 4 Chemotherapy begins today. I was really happy, humming along, doing some laundry and dishes, working on some editing projects when the phone rang. Health care insurance red tape required that I drop everything I was doing and rush to the hospital for an appointment with an oncologist who is not my oncologist, as mine is out of town. Miss that appointment and today’s chemotherapy appointment was in jeopardy.
That’s when it happened. Again.
I am baffled as to how it is possible that three different doctors from the same oncology office holding my same medical file could come up with so many variances in how I’m going to be treated, what I can expect in terms of prognosis, what our goals are, where we’re going with this.
Imagine it this way. You’re a Major League Baseball player who just slugged one out into center field. As you approach first base, three different managers — all from your team — are screaming three different opinions as to where you’re headed. Stay? Run to second? Run to third? You’re so confused that you don’t know what to do, you freeze, you end up being tagged out.
I felt that way yesterday — and have felt that way plenty of times in the past weeks. Here are just a few examples of the contradictory information I’m getting that I think would push even the psychologically strongest among us over the edge:
“We’re going to keep going until we get a clear scan and you’re in remission, then we will carefully watch you and at the first sign of a recurrence, treat you again.” vs.
“We don’t expect your scans to ever be clear. We’re going for stable here. We’re just glad nothing has grown, progressed. You’ll always have these tumors in your lungs. We don’t expect them to disappear. If they do, that’s a bonus. You’ll just keep on having chemo.”
“Once the chemo clears the cancer in your lungs and lymph nodes, we’ll remove your left breast implant, take out whatever remains of the lump in your breast, radiate that area, put the implant back in,” vs.:
“We might just leave that breast lump there. In fact, there is a clinical trial where half the women are having the lump removed and the other half aren’t. We’re studying how this affects long-term survival rates. That clinical trial might be open to you.”
“Yes, the four largest tumors in your lungs appear to have shrunk by a few millimeters each.” vs.:
“Well, the CT Scans aren’t that accurate. They can be off by a few millimeters. Hard to tell if there has been any progress. At least you’re stable.”
We only see “uptakes” on your PET Scan indicating cancer in your lungs, lymph nodes of your breast, left breast, and possibly a spot on your clavicle. Nothing else.” vs.:
“We see three small spots in your liver, but they appear to be benign, perhaps hemangiomas, and likely nothing to worry about.” Then, yet another doctor, after viewing the same CT Scan results:
“No, the radiologist clearly indicates that those spots on your liver are likely cancerous. We have no way of knowing for sure without a biopsy, but we don’t plan to biopsy. We’ll just keep on with your current treatment.”
Then, as I’m sobbing uncontrollably in the Exam Room yesterday, the doctor turns to me and says, “You seem depressed. Do you need a prescription for an anti-depressant?”
“No,” I manage through the sobs. “I’m already on one.”
“Perhaps you need to see a counselor?”
“Nope. I have one of those, too.”
And then it occurs to me that my reaction to all of this conflicting, contradictory, horrifying information regarding the life-threatening condition I’m battling isn’t depression.
It’s called NORMAL.
Copyright 2011, Amy Rauch Neilson