Monday marked 9 months since I had brain surgery and once again, I forgot to even notice the date.
There was a time when it was inconceivable to me that I could ever pass the 18th of the month without thinking back to that day, at least for the first year. And yet now I have missed the last two months. (I'm pretty sure I won't overlook the actual 1-year anniversary though.)
Today I'm getting immunotherapy treatment #10 and an iron infusion topper so I'm sitting in the treatment room for hours on end today (maybe about 5 total before I'm done) and I have a long "to do" list in anticipation of the start of the fall semester next week so naturally, I'm taking some time to record some of my thoughts here instead.
My iron has been low since I first started getting bloodwork and after months of little to no progress with oral supplementation, today we're trying the infusion. It takes about 4 hours so today's treatment is long but also a good reminder that this is much more the norm for many cancer patients and probably the reason so many people always offer to come sit with me during treatments, not realizing that I'm usually here less than an hour.
Officially nine months post-diagnosis, these days I find myself frustrated by little things more than I ever thought I'd allow myself to be. I like to have a plan. And honestly, it doesn't even matter when things have to deviate from "the plan" all that much to me as long as I can understand the reasoning why. I'm pretty sure this is just my version of being neuro spicy and at almost 51 years old, I no longer worry about trying to change it. It's who I am.
Obviously, these past 9 months were never a part of any "plan" I had, but I think I've done a great job of adjusting and rolling with the punches, putting on a brave face (that honestly isn't for show because it's how I've felt 99% of the time during this whole ordeal) and just moving forward with what needs to be done.
But oh boy, that other 1% of the time. When it hits, it hits hard. And this week, I am just weary.
I'm weary of a healthcare system filled with people who know so much but can't seem to find a way to communicate with each other.
I'm weary of conflicting advice given by different providers in the same practice and then what basically amounts to gaslighting when I try to gingerly point it out.
I'm weary of how little we even know about cancer (and by "we" I mean the medical community) and then by extension, how little the general public actually knows about it.
I'm tired of having to explain that immunotherapy is not just another version of chemotherapy, so most of what we have come to know and expect to be the case with chemotherapy doesn't generally apply to me.
I'm weary of the "is it side effects or is it perimenopause?" game and a medical community that doesn't know or seem to really care.
I'm weary of explaining that despite my age, I am still (to my knowledge, but see above) showing no actual signs of menopause, which also seems to make me a medical mystery to most people (medical or not) that I encounter.
I'm weary of the crash course in med school I've had to endure these past 9 months and the constant inconsistencies in what I do learn.
I'm weary of trying to decide whether I should go back to school or give up the doctorate dream.
I'm weary of people asking me how I'm feeling.
And I'm going to be brutally honest here, I don't even care of that last one bothers you or makes you feel targeted in any way. I just don't know how many more ways I can say "I feel great!" because the underlying question has to do with some kind of expectation that because I was diagnosed with cancer, I must not be feeling well. But the truth is, ever since Nov. 18, I've felt the same as I ever did. Sometimes I follow up with, "if they didn't tell me I had cancer, I'd never know anything was wrong!" But even that response is so tiresome now.
When people ask that question, they mean "how are you feeling physically?" Or at least I assume they do. If they meant "how are you feeling mentally?" I assume they'd know they know that's a loaded question and very little of the answer is likely to have much to do with me medically. As I said, 99% of the time when it comes to my medical situation, I'm fine.
But I get the sense that people don't really believe me when I say that or give my usual upbeat answer. And I get it, I would have been the same way before -- skeptical that anyone was actually capable of being so cheerful in the face of so much struggle. Or maybe what's really happening is that people want to believe that you feel sick when you're sick, because the alternative is that they too could be unknowingly walking around with something terrible growing inside of them. I need to think on that a little more.
But here I am, most of the time. I worry so much more about my kids and my husband and my family and my students and covering my bases for volunteer work than I do about my medical situation. (I mean, after reading that how is there even space inside my brain to devote energy to worrying about anything else? :) ) And maybe if I'm open about these moments I don't feel so great (emotionally, not physically!) you all will better believe me when I say I'm feeling great.
Or better yet, just stop asking me all together. Because as much as I do like the attention (just ask my husband!) I think I'm getting a little weary of all that goes along with this too.
I don't feel sick and I'm weary of feeling somehow guilty about that.
I'm weary of being told I'm brave.
I'm weary of being told that I am evidence of answered prayers. (This one is SO complicated because I do believe in the power of prayer but I can't reconcile believing that I have been somehow singled out when so many others who are also being prayed for are not. I just don't think that's how God works.)
In short, I don't want to be "special" because of this anymore. :) But I don't want to stop openly sharing about it either and I'm just not sure how to move forward with those two things both being true.
I have an MRI of my brain tomorrow and a follow-up with my neurologist. A PET scan has been scheduled for October. I can't get MyChart to let go of the "you are overdue for a mammogram" reminder even though that will be my third PET scan in less than a year. It doesn't take a brain surgeon (see what I did there?) to understand that today's malaise is undoubtedly a result of this week full of medical stuff I've had to deal with and the inevitable anxiety it dredges up.
I'm hoping that I'll have good news to post tomorrow and earn another 2 months of being back to my 99% sunny self.
I may be in a funk, but I'm not so far gone that I don't remember the days just 9 months ago when I prayed to be where I am today.
No comments:
Post a Comment