Heading into these treatments, both my cousin Mike (an oncology raqdiologist) and the radiologist whose care I was under mentioned very briefly -- almost in passing -- that I might lose "some" hair from radiation. I honestly gave it very little thought, in part because I really thought I would somehow be immune to this particular side effect. Though as I look back, I understand now how prevalent this topic has been in the course of all of this.
* Even before the surgery, a doctor in the hospital during my first stay made a point of telling me how I'd have very little hair shaved and would most likely just be able to adjust my part ever so slightly and barely even notice it. I remember thinking that was such an odd detail to share with me but I just honestly didn't yet understand how I was going to come to feel about my hair throughout all of this.
* The morning after surgery, a neurologist commented that I might be bothered by my glasses hitting the incision that ran above my ear, but then he noticed that it was up even higher and remarked on how lucky I was. That was two now, I felt like I was winning the brain surgery/hair effects lottery!
* When I got home from the hospital and took a good, long shower to get the adhesive and general post-surgery gunk out of my hair, I was at first a little taken aback by the hair that was coming out in clumps. A woman who works with Dr. Tsung had done the first shaving of my head the morning of surgery (looking back maybe that should have felt a little more traumatic at the time but it really was so minimal as promised!) It didn't take long for me to realize that most of what was now coming out was just left over from her shaving it or maybe even the shaving that might have happened after my hair was already gathered up into the weird little ponytails used to keep it out of the way. Side note: I recognize now that they could have opted to just shave my head so I am VERY grateful that they took the time to put those weird little ponytails in instead. It's a simple touch that did so much for my dignity at a time I had so very little of it on hand.
* Once that initial shower was done, I quickly figured out how to style my hair in such a way that it was nearly impossible to see my incision. Once the stitches were removed, it got even easier. The nurse even commented on how fast my hair was growing back, people were constantly telling me they couldn't even see where I'd had surgery, and the only advice I was actively ignoring from my neuro nurse was the advice about wearing a hat because the cold didn't bother my incision and if anything, hats made me *too* warm at a time I already had steroids making me sweat around the clock. My nails were also growing crazy fast (they still are) and to be honest, these were small signs of "normalcy" that I clung to. I could feel how my hair was thinned out but with a few styling tricks, I don't think most anyone else really could tell.
* Somewhere in the midst of all of this we had learned that my treatment was going to be immunotherapy, not chemotherapy. I'll share more about what that means and looks like next week but what it meant to me initially was that I wouldn't lose my hair. I didn't think that really mattered to me and I certainly think I was prepared for it but somehow, hearing that news was such a relief. I now understand fully all of the complex emotions that swirl around cancer patients and their hair. I remember that my dad shaved his head (right after our wedding, where he walked me down the aisle while brushing away the curls that were falling out as a result of the chemo he had just started) because it was important to him to 1- still have hair at our wedding and 2- be the one who decided to shave it as an act of control and maintaining some dignity. I've always thought I would do the same if put in the same position.
All of this brings me to yesterday when, in the normal course of washing and drying my hair, I noticed what is definitely an inordinate amount of hair falling out. I try not to bother my cousin too much and I certainly try to keep perspective about things that are mostly vanity-driven but I just needed to know what to expect with this. I mean, for how long should I expect this to continue? Will this be temporary? (That answer is yes, thankfully!) Why did I somehow think that *if* this happened, I'd mostly lose the new growth along my incision lines? That doesn't actually even make sense, given my understanding that the radiation targeted the tumor cavities, which of course don't line up with the incisions. Also, he tells me that sometimes hair loss is more significant at the radiation "exit" sites than the "entrance" sites, which in my case would mean the side of my head that was, prior to this, in really good shape.
Suffice to say, it's time to add to my hat collection for a while. The newly bald spots are in pretty visible areas and it will likely be a while before I can figure out a good styling trick again. There is a part of me that just wants to let this go - embrace and accept it as an outward, visible sign of what I've been through. And then, there is the vain side of me that is just not sure she can really do that, especially during what is actually a pretty vulnerable time for me. And there is the part of me laughing at the naivete of the three weeks ago me who didn't think this would even happen, or be that significant if it did. Wrong again! :)
My cousin says it should only be a week or two until this phase is over and the re-growth begins (though hair lost due to radiation will not come back quite as fast as the hair lost to a razor) so that means this should be at its worst in a few weeks and then get better from there.
In the meantime, I also learned on Monday that I had broken a tooth. My dentist was able to pull out the broken half and then referred me to an oral surgeon, but with the holidays I wasn't able to get even a consultation until Wednesday. Meanwhile, I have some pretty excruciating pain (why is mouth pain so much worse than brain surgery recovery?) and I'm honestly not sure I'll make it until Wednesday. This pain had me crying real tears this morning and I'm back on the Norco I haven't needed since I was in the hospital. On the bright side, maybe this will finally jumpstart a little weight loss? :)
I'm going to try to do an update about once a week - I'm finding myself in this weird limbo of still needing to acknowledge everything that's going on (and honestly, wanting to share it and be open with you all) but also needing to re-acclimate to some "normal." Aidan goes back to school on Monday, Ainsley goes back on Tuesday, and Edgar will be traveling for a lot of next week so ready or not, "normal" is on its way! (And if not for this tooth situation, I'd be much more ready for it!) It's also time to buckle down and get serious about preparing for my spring classes so if you see me back here blogging too much, be sure to say something about the syllabi I should be writing!
One last thought to share for now - recently a friend warned me to try to avoid engaging in the "comparison" game and she's really not wrong. Sometimes, it just really helps me to keep perspective because there are so many "it could be worse" examples to look to. Other times (as she reminded me) it borders invalidating your own feelings and experiences. I find myself walking this line all the time right now, (an entire blog post devoted to the subject of my hair is a pretty good example!) and sometimes I'm guilty of not being empathetic enough to the struggles of others. Sometimes someone will say or do something that just flat out pisses me off in that moment but it isn't really warranted or justified for me to react that way. Mostly I trust that others understand where these feelings are coming from but it's just so complex and hard to navigate and there is a lot of guilt involved. This journey is so, so hard sometimes. I am going to see a therapist next week and I look forward to where that may take me as well though to be honest, this blog may be the best therapy for me right now.
We've been so blessed with incredible support from our admittedly very large village. Edgar has started doing some "my wife had brain surgery" material in his stand-up (who says brain tumors aren't funny?) and one of the things he talks about is the sheer number of prayers that have covered us. At first I found it so overwhelming (and I'll be honest, I was even angry at first because I didn't *want* to be someone who needed those prayers) but now I am just so grateful. Whenever someone says they've been praying for me, I ask them to please keep those prayers coming. I have a long road ahead. But while I *think* my immediate "danger" period is behind me now (knock on wood) our friends Jason and Becky Jester are facing a battle of their own and if you have been praying for me (or sending positive vibes) in any way, I ask you to please add Becky to that list for whatever you do to show your compassion and concern for others. She's a 49-year old wife and mother of 3 who is struggling with some complications after a liver transplant at Northwestern Hospital in Cbicago. She's going to need another new liver. She is an incredible fighter and her husband is an amazing support system in a time of so much uncertainty. Please keep them in your thoughts.
This life is not a comparison game of who has it worse, though it's all too often so easy for us to feel that way. There is so much room and space to feel conflicting beliefs and thoughts at the same time -- I can be sad about losing my hair and grateful to be alive all at once without having to pass judgment on priorities. You can too -- and if you're lucky, it won't take something like a few brain tumors to help you understand that.
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This is not even 1/2 of what I've actually lost in the last 24 hours. Also keep in mind that it's all coming from very concentrated areas (which is kind of a good news/bad news situation.) All of this has fallen out from the area I used to use to comb over that new growth down the middle.
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