Unformation & the Standard of Carelessness

One of the most comforting aspects of my cancer experience has been getting information, from doctor’s, from nurses, from books, from friends, from internet articles. I thrive on understanding the whole picture, what is going on in my body to medical advancements to having a plan of action. Unfortunately, the complexity of cancer and its corresponding treatments don’t often lend to a definable plan of action or even complete understanding of the whole picture. Even more unfortunately, the oncologists deliberately withhold information from patients in the fear of them becoming depressed, emotionally debilitated, and “giving up”. I could go on about that, but let’s just say I think that’s not fair and not their job. Anyways…as if all this missing information (not necessarily “misinformation”) isn’t enough, then there is the lack of information BETWEEN my oncologists to deal with.

I met with my surgical oncologist a month after surgery, when he removed my staples, reiterated the relative success of the surgery, and laid out a plan for me. The plan was as follows:

We hold off on medical treatment, take a scan in 3 months, then another in 6 months, and make a decision based on the results as we move forward. Those decisions about treatment and surgery would be dependent upon whether the scans showed cancer growth. That was fine. I was glad to be pursuing this route, sans side effects from treatment that have ruined my days the past year and a half, but which also might have been saving my life. I’ll get to that later.

This morning I had a follow up with my medical oncologist, who, I’m reluctant to verbalize, I’ve never felt too enthused about, as his demeanor tends to be more routine and flippant about the whole process of chemotherapy than it is empathic and personalized. Despite the oncologist reiterating that I’m “not normal”, I consistently get the idea I’m to just follow the plan and take the infusions like everyone else. Nevermind my current state of health. Nevermind my unique demographic within the greater cancer community. Nevermind the extreme rarity of my type of cancer. Nevermind the limited information we have about actually treating my cancer.

So today, I expected we were going to schedule a CT scan 3 months after surgery, per the plan, to see how things were coming along. But very quickly the exam turned to getting me back on Xeloda and Avastin, with a casual dismissal of their “minimal side effects”. First off, let me clarify, the side effects aren’t minimal. They are certainly not as bad as other medications I’ve taken or I’ve seen others take, but that doesn’t mean they are a minor annoyance. The hand and foot syndrome is downright debilitating. I’ll refrain from the specifics, but just know it’s awful. Then there is the neuropathy I’m still having to manage everyday, walking and running on numbed feet, worried that the damage might be permanent at this point. So yeah, the side effects aren’t so easily dismissed from my perspective.

The greater frustration, however, is the change in plan from what we determined with my surgical oncologist, which was to stay off chemotherapy and, in a sense, “experiment” with my situation. We would monitor the cancer growth to make sure it wasn’t getting out of control (incredibly unlikely due to it’s slow rate of reproduction) and determine if the chemotherapy was even having an effect at all. We would determine if it was the drugs keeping cancer at bay or some other biological process halting the cancer growth. We are “experimenting” because the information we have about combatting cancer, especially rare cancers, is incredibly limited, so much that we can take these risks in treatment without concern of being negligent or naive.

So, to be having such relative success in my cancer experience and to formulate a plan around this success, and then have that plan almost wholesale dismissed during one routine follow up is…well..it’s fucking frustrating. But it’s not even frustrating that the plan was thrown out the window (it wasn’t), but rather that my medical oncologist didn’t seem to have any of the information that my surgical oncologist did. I don’t know if there was a breakdown in communication, but this seems to be par for the course between the two. CT scans are scheduled on top of CT scans because one doesn’t know what the other is doing. And here I am getting pulled back and forth between scheduling and treatment, even though I’M the one dealing with both the physical and emotional difficulties of this situation. It would be one thing if I heard, “Oh, I’m sorry. I didn’t realize that had been the plan” or “I’m sorry, I didn’t know that was already scheduled. I’ll check back with your other oncologist.” But it isn’t. It’s talking in circles and leaving me more confused and less emotionally stable than when I entered the office.

Ultimately, after some back and forth with my medical oncologist, it was determined that I need to call my surgical oncologist and set up the first CT scan. It was also determined that I could start my chemotherapy treatments anytime I wanted at this point, whether that is in two weeks, after thanksgiving, or the beginning of next year. Essentially, he left it up to me, though all the while casually reaffirming the Standard of Care of chemotherapy treatments until surgery or chemo does the trick.

Here’s the thing though, lest I start to sound like a bratty, spoiled kid who just doesn’t want to take his cough medicine because it tastes bad. The doctor’s have said I’m not normal. I’m not responding to this experience the way most do. In fact, they say most patients in my situation (how many is that actually…I’m 1 to 2 per MILLION who get this cancer) DON’T respond to chemotherapy treatments. Everything I have read about my cancer says that surgery is the ultimate deciding factor in “curing” the cancer. Really, so little is known about my cancer they aren’t sure WHAT to do, short of surgery. But here I am, two surgeries out and no growth of cancer over the last year of treatments.

Which is exactly the reason why we are “experimenting” in the moment, really trying to determine if the chemotherapy treatments are what held my cancer stable or if it was something else entirely, even if we never figure out what that “something else” might have been. It’s worth a shot, but not just because chemotherapy sucks. It’s worth a shot because we have so little information about what’s going on with my cancer and cancer in general, that we SHOULD try to experiment. We SHOULD add this experience to the accumulated information that is crucial to future treatments.

We should also experiment, because I’m not as at risk as other cancer patients are. My cancer is slow growing, very slow growing, enough that I’m never really at a critical point. This is, unfortunately, not the case with others. For those that KNOW chemotherapy is holding cancer stable, or shrinking it, they NEED to be on it routinely, without fail, lest their cancer take over their bodies without remorse. For them, going without treatment can lead to massive cancer expansion within weeks, and so they don’t have the luxury of seeing if chemo is doing the trick or something else…but I do. My cancer grows very slowly and being able to detect it’s growth is something we can manage, so to hold off on treatment, as even my medical oncologist conceded to today, is not a life or death situation.

We are not naively hopeful about this situation, however, because if the scans were to show cancer growth at any level, I would jump back into the infusion chair before you could even schedule the next appointment. I’m not being flippant about this by any means, but since all the information I have come across gives little credit to chemotherapy for my type of cancer, and because I’m not ever in a critical stage of cancer growth, it’s imperative we give this a try.

But I’ve discussed all this before. We know what the plan is and we know what we feel comfortable pursuing. What I’m having trouble reconciling after todays visit is two-fold.

1. The inability to have a more structured system of information sharing between my two oncologists before I go into their follow up meetings, and,

2. The rigid protocol and Standard of Care of chemotherapy treatment without much consideration for the individual receiving the treatment and their current diagnosis.

The first point is more about my emotional state than offering an outline for systematic information sharing (it’s called an email?). Any cancer patient will tell you about the ups and downs of the whole experience and the various processes we have to go through in order to find out what’s going on inside our bodies, or even if we have months, years, or an indefinite timeline of mortality left. They’ll tell you about going into dark places, finding light places, or coming to some point of reconciliation and just going about life as usual. But no matter the calm each of us may find, just below the surface there is always some manner of emotional tension, that often arises when we have these doctor’s visits, enter hospitals, or are forced to get more information about our cancer or diagnosis on a periodic basis. For some of us, having a plan of action keeps us emotionally stable. It allows us to put our cancer in a framework, to know that although anything can change in a moment, THE PLAN is what we follow until cancer says otherwise. So in this specific circumstance, I had been working off this plan since just before surgery up until today, when all of a sudden my medical oncologist steps in as if the plan never existed, completely throwing off my sense of stability and TRUST in the plan.

If i’m being totally honest here, however, I won’t lie…I trust my surgical oncologist more than my medical oncologist, despite only seeing my surgical oncologist a few times a year. With the information I have about my cancer, I know HE is the one that will “cure” me. HE is the one that will get rid of my cancer through surgery and so he has a more vested interest in working with me and giving me straight answers. Admittedly, he’s far more personal and caring than my medical oncologist too. I think, from my observations of the waiting rooms and my understanding of the system, this is probably because I’m less part of an assembly line of patients to him than I am to my medical oncologist. The chemotherapy treatment centers are a funnel of patients where nurses and doctors alike seem to be overworked and go through periods of stress. The surgical oncologist’s office is much more laid back. All that aside, I trust my surgical oncologist because he helped me formulate my plan, knows on a directly physical level what’s going on inside me and is much more attentive to my needs and questions. So I trust him and I trust our plan, while, as understanding and forgiving as I am towards my medical oncologist…I just don’t trust him as much. I think, to him, I’m just a number. Just another patient to funnel through the process and Standard of Care of giving chemotherapy and letting ME deal with the side effects, no matter if the chemotherapy may not even be necessary. I feel like, to him, it’s just about playing it safe, following the law of cancer patient averages, and giving me the chemotherapy because “that’s what we do”.

I only wish those two could either communicate more or I was given a definitive answer as to who is my appropriate guide in this situation. I’m looking for that emotional stability and trust, and although I feel like I have that in this plan and working with my surgical oncologist, everything is always so frail and tenuous in the cancer state that sometimes it feels like the floor drops out from beneath me after each appointment when plans are changed.

The second point I continue to address, for good reason, which struck me deep after this morning’s appointment. The Standard of Care is based on best-practice, seeing the overall positive results in chemotherapy treatment, even if those positive results are mere months of extended lifespan. This Standard of Care has been developed over decades of trial and error and accumulated knowledge of cancer and medicinal breakthroughs, but that doesn’t mean we know exactly what we are doing when it comes to cancer. We’re still taking shots in the dark and often hoping that SOMETHING works, without being able to point to what that something might be, and so, although I’m not the professional or the expert in this situation, I still feel like my considerations regarding treatment should be more thoroughly addressed. It’s not that, when I press the issue, my considerations WON’T be addressed, but therein lies the problem…that I have to bring up my concerns. I can’t once think to an appointment with my medical oncologist where I was asked, “What would you like to do about this?” or “How do you feel about this treatment?” Even if the questioning is a little more patronizing than honest, to at least involve the patient in the discussion should be part of the Standard.

It’s been said I’m not “normal” as a patient. I respond better to treatment and everything is going unexpectedly…in my favor. But I think I’m not normal in other ways as well. I’ve been periodically trying to understand my cancer outside of the framework of dominant culture’s perception, by reading a number of books on cancer, considering different approaches, reworking terminology, and just trying to inform myself in ways that I think might benefit me, primarily emotionally but maybe physically as well. I know other cancer patients do the same, but this is not the standard. The expected reaction is to gather your friends, put on a “cancer fighter” t-shirt, walk into the treatment center with your posse, and go about your days “being positive” and all that surface level stuff. And that’s great. I would never diminish someone’s attempts to face down their mortality in ways that give them calm and agency. The problem, I tend to think, is doctors have carried out their position as experts in a way that doesn’t give agency to the patients because the patients have conceded all decision making in exchange for following the cancer patient protocol. The doctors tell you what to do and the cancer patients take it. Come what may. But that’s not me.

Trust me, I listen to my doctors. Every word. But I can’t help but feel like a kid in the principal’s office at every visit, knowing I’m going to be told what to do and take the “punishment” without response. The relationship I have with my medical oncologist is such that I feel if I do offer an alternative perspective or consideration, or even resist the advised plan of action, that I will become a nuisance patient, a burden, an annoyance, and will be met with a “who do you think you are I’m the expert here” type of retort. I wish I was exaggerating. And it shouldn’t be this way.

I’m not saying oncologists should hand over all decision making to the patient, but more than anything, a CONVERSATION should be held during each appointment, where options are discussed and the potential for questioning and explanation is part of the standard, instead of a hurried process where one patient is pushed out so the next one can come in. Admittedly, I think this DOES happen. Maybe I’m expressing frustrations that I’ve somehow been funneled towards a less than compassionate oncologist with minimal social tact who is more concerned with plugging me into the framework of Standard of Care than he is helping me feel better about this whole situation.

Again, I’m not normal, and I think that is part of why I’m so affected by this change in plans. Look, chemo is no joke. You may not be able to tell how I feel just by looking at me, and I may be highly-functioning and very active despite a year and a half of treatments, but that doesn’t mean this is the equivalent of a sore back. It affects my physical abilities EVERY SECOND OF THE DAY. Right now I’m feeling the neuropathy in my feet, a continuous numbness that never lets up. When I’m on chemo the drugs accumulate till my hands and feet turn discolored and it feels as if I’m walking on sandpaper due to Hand and Foot syndrome. At it’s worst I couldn’t turn on lamplights and my fingers and toes cracked and bled. And I am a runner. Not just “I run”, but I AM A RUNNER. It is my identity, part of my day, crucial to my emotional stability and foundational happiness. So for other cancer patients, although chemo ALWAYS sucks, I can’t help but wonder if they are ok accepting the standard of care because it’s less about their physical state and more about their mental and emotional condition. Mind you, I’m not saying others have it easy. I actually think I have it easier than most, but I often struggle with accepting my continuous treatments when I know each one means I’m closer to losing the one activity that keeps me stable. If I just needed to go about my day working and making it through, that’s one thing, but when I know I’m UNABLE TO RUN because of my physical degeneration…well…how do I reconcile that? So, in terms of just throwing the Standard of Care at me, casually giving me chemo when there is the VERY REAL potential that I MAY NOT NEED IT, I’m not so flippantly willing to follow the protocol without deeper consideration…but that is definitely not the approach of my medical oncologist. He couldn’t care less that I’m a runner. He couldn’t care less that I am emotionally and intellectually invested in understanding my cancer and treatment. He couldn’t care less that I may be a an extreme outlier. But I do care. I have no choice.

And I hesitate to paint such an unfeeling picture of my medical oncologist, but I have to be honest. After yesterday’s appointment, after listening to all the trite, repeated, insincere small talk followed by the complete ignorance of the previously established plan that is both exciting and hopeful to me, this is how I’m feeling. I feel like another patient standing in line, waiting for my pill, because this has been the standard for so long and no one feels they are in the position to try anything different. No one is interested in new information, sharing information, discussing information. The process has become so routine, so defeated, that we know little else what to do except keep handing out the pills and hope for the best.

I care more, though, admittedly in unavoidable self-interest. I’ve got more at stake in the immediate sense than just taking the pill and hoping for the best. I want my quality of life in the moment to be at it’s utmost as we figure out the best plan of action, as we see what turn my cancer makes, as we consider options that are outside the Standard of Care…if only because I have the luxury to do so. And if cancer writes the plan for us and I have to go back to the standard, taking the physically degenerating concoction of chemotherapy…then so be it. I’ll do it, without flinching. Absolutely. But sometimes we need to consider changing the standards. We need to have discussions, conversations, and new considerations. We need to inform each other. Doctor to patient and patient to doctor. And if we end up deciding the old standards are still best practice, even on an individual basis, then at least we have that new, refined information to work from. That’s good medicine, best-practice, to me.

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6 responses to “Unformation & the Standard of Carelessness

  1. it’s incredible how common sense, cooperation and empathy can be hard to find.

  2. Here’s hoping your surgical oncologist wants to keep you on the “original plan”. Since you are not a “normal” case, maybe the old standards don’t apply or at least need to be tweaked a little. Hope you are able to continue to run whatever the decision.

    • Pete, I think we are a go to stay on the plan, but I need one last confirmation…I do hope to keep running whatever the decision as well. Thanks.

  3. Dude you are right on! I know exactly what you are going through. While it was not me, it was my young daughter. We were pushed into an immediate decision and followed standard protocol for 4 to 6 weeks. When just like you, after research and 2nd & 3rd opinions, we found a different doctor that was interested in our daughter’s holistic well being. Shared with us what the standard protocol was, and why he would or would not follow the plan based on how my daughter and we felt about it. I could go on and on but rest assured that this, by far… is why my daughter just celebrated her 5 year anniversary CANCER FREE!!! Go with your gut! You have been on my mind and in my prayers for well over a year now.
    God Speed your friend, Randy R.

    • Randy, So glad to hear about your daughter’s successful experience with cancer (and the process). Thanks for everything.

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