After an evening of fighting traffic with my bike, riding hill repeats and cracking jokes with my Team In Training crew, then fighting more traffic on the ride back home…I feel like I’ve calmed some of the emotional chaos in my head from this morning and need to expand a bit on what happened today, if only because the cathartic release is very important to me.
But first, let me say thank you to everyone who responded to my blog post, instagram photo and facebook update. Your sense of anger, and even outrage, expresses to me that you actually care about my situation and are emotionally invested in it to one degree or another…and I appreciate that if only because it lets me know I’m not at all alone in this, which would be a frightening realization in its own right….because after today things got a lot more scarier for me than I anticipated.
But before I get into that, let me also clarify something else. I’m not happy with what went on with my oncologist today. I still think it was absurd that he let me come into the follow up meeting without even looking at my CT Scan and sending me away with no concrete diagnosis. If it wasn’t unprofessional, it was at least careless. But here’s the thing…I’m not mad at him. People make mistakes. I didn’t ever get the sense that he was being DELIBERATELY careless, just that, well, I slipped through his cracks, I guess. Honestly, I’m making the decision to give him the benefit of the doubt, because I just don’t think it would help if I would harbor anger towards him over this. The results of the CT Scan are not going to change, no matter when he gives them to me, so I’m primarily concerned with just alleviating my own emotional troubles more than anything else. Plus, this guy essentially saved my life. I mean, he’s the one who sliced me open and got me to where I am today, taking me off the precipice of a 39 out of 40 cancer score and to wherever I’m at now…still alive, at least. And finally…this isn’t a guy I want to lash out at. I want to always be on his good side, because I still believe we are ultimately going to end up having a second surgery down the line and the last thing I would want is a state of frustration or tension between as he cuts me back open. I want to be someone he LIKES. Someone he feels connected to and whose survival he feels INVESTED in personally, not just because it’s his moral obligation. So I’ve chosen to accept this as a frustrating, but not malicious or intentionally careless act on his part. I just slipped through the cracks of his workload is all and I’m just going to wait until the phone call rings through and I get a better idea of what is going on. I hope you understand where I’m coming from.
So now let’s talk about the fear that grew today. Because it certainly did grow. When my oncologist felt around my abdomen and expressed shock and astonishment at my progress, an initial wave of excitement crashed into me and I proudly patted myself on the back for any potential part I may have had in this development, but that feeling quickly subsided and then went crashing to the floor as he talked further. Because he said some very worrisome things…in a manner in which I think he didn’t intend. I think they were deliberately quieted thoughts that slipped out amongst his satisfaction, that gave a fuller picture of what I didn’t realize I was facing.
My interpretation is that he had a pretty poor outlook for my surviving this ordeal. And that scared me. And when he realized that maybe things aren’t so dire as they were, he was more comfortable juxtaposing the current POTENTIAL good against the previous bad.
“I did NOT expect for you to have progressed like this. Honestly, I was expecting MUCH worse. I did not expect your belly to be like this.”
Ok, well, that’s good. Except, why was he expecting much worse? It sounded to me like he was expecting either no progress or even regression. But I shocked him…so good…but…
“It seems to me an indication that you are responding to the chemo. This seems like the chemo is working. These tumors usually don’t respond to chemo.”
Yeah? Great. So, this extended chemo treatment plan was more a shot in the dark, a long grasp of hope, instead of a definitive plan of action with predictable results? I wasn’t comforted…my fear grew.
“Of course, this progression may be residual from the heated chemo we gave during the treatment itself.”
And that one really got me…because it means this chemo treatment plan, that seems to be more of a shot in the dark than anything else, may still NOT be working, but that my regression is from the previous treatment during surgery and as time passes this slow growing cancer may prove to actually STILL be growing despite this initial encouraging diagnosis. The waiting game will keep waiting.
“Truthfully, I didn’t think it was going to be worth it to go back in, but now we’re going to reassess your situation.”
Ok….you REALLY let that one slip doc. And that one scared me the MOST. Because it says to me, after opening me up and seeing the extent of my cancer, he didn’t think I had a chance of living to the point where we even do the second surgery that was part of the plan given to me. Now, I know this second surgery was reliant upon the chemo treatment even working and shrinking the tumors, but now it sounds like that was just a total shot in the dark….and it may STILL not be the successful treatment we think. And that scares me…very much. Because until we get a better idea of what is going on, which will only be determined by more scans down the road…I may still be on a course towards a tragic end.
So yeah, I’m a little more scared now. Or maybe more than a little. Because now I know what the doctor really thought of my potential, and although part of me wished it was protocol, law even, for a doctor to give you the straight story….I understand why they don’t. I mean, my doctor has always been hopeful and positive about my situation…to my face anyways…because the positive potential is ALWAYS at hand, and imagine the alternative. Imagine if he said to me,
“Well, during surgery we found a troubling amount of other cancer tumors that need to shrink before we cut them out…and that’s going to require an extensive chemo treatment plan…but success rates show that these tumors don’t really respond to the chemotherapy we have at our disposal…so we’re probably not even going to get to the point where we do a second surgery…and we’ll just have to determine how long you have to live.”
I mean, IF that’s really what was going on in his head, how do you just come out and say that to a patient? Weaker individuals might commit suicide before even giving it a fighting chance, right? So, as the book I’m reading so painfully, but truthfully puts it, doctor’s often only give “truth in small doses”, so the patients can handle it and process it, because honestly, what I’m SLOWLY learning, is that the truth about cancer and treatment is not all that pretty, not all that hopeful. It’s sad. It’s tragic. And it’s downright frightening….because we have a long way to go in “curing” cancer. I’m fortunate to exist in a time with medicines that MAY have a decent chance of raising survival rates and that is well beyond the days of shoddy surgical procedures, but I’m also a little less fortunate to live in a time that still has us feeling blindly in front of us for ways to cure cancer without obstacle. And that’s scary.
But you know what…so what. I’m scared, yeah. In part because I’m still waiting for the full picture of my circumstance to paint itself out for me, but also because my oncologist said a lot more in his inadvertent slips of truth that gave me a great sense of encouragement. There is VERY MUCH the chance that I happen to be one of those that DOES respond to the chemo, for one reason or another. Maybe, despite my cancer mutating and growing in my body for whatever reason, maybe my lifestyle prior to diagnosis has a significant impact on my healing. Maybe my continuation of strength building, healthy eating and active living is enabling the chemo to work in ways that it doesn’t in others. Maybe….just maybe. And I don’t know really…but I only have one option at this point, to keep keeping on. To keep doing what feels right to me and hope that, even without extensive evidence to draw conclusions, that I’m doing something right to keep my cancer at bay. I don’t know…and I don’t know if I’ll ever know, but I’m going to keep living my life, doing everything “right” in a way that speaks to me…just in case. If nothing else, living a life of quality helps to quell the fear that might consume me should I let it…and although it may be there…I don’t plan to let it own me. I’m still counting on beating the odds and experiencing a complete remission. And I plan to keep surprising my doctors, forcing them to regret the story they wrote out for me before I had written any of it myself.