I am not a person who enjoys surprises. Like, not at all. (My husband has been repeatedly warned to never even think about throwing a surprise party for me.) So as you can imagine, the past few months have been a special kind of hell for me. I'm lucky to be surrounded by a medical team who does their best to inform and educate me, but not everything can be planned or anticipated (despite my desperate will to create a world that functions that way.)
In no particular order, here is a short list of things that have irrationally bothered me since this all began:
1. The doctor who told me I'd only have to stay one night in the hospital after brain surgery (in retrospect that was totally suspicious) and that I would be in a room alone. (That one should have been a given - it is 2025 after all, but alas it never happened in a combined 5 nights of hospital stays at two different hospitals.) That same doctor told me I'd definitely be able to fly to London in January. (I'm pretty sure he only said that because he knew I wouldn't actually still want to go at that time.)
2. I was told that when I was wheeled into the operating room, there would be monitors on the wall with the most recent MRI brain scans they had done just before surgery. The monitors were there, but they weren't turned on and I was so confused when they came at me with the gas and still hadn't turned them on. It just wasn't the order I was expecting and it threw me off. Also, I spent more than an hour in the recovery room and I still can't tell you anything about what it looked like in there. The process of waking from anesthesia was scary and confusing and I don't remember ever really opening my eyes. Worse yet: two of the people in that room knew me but I never saw either of them. I don't really remember the ride up to my room but I do have a vague memory of it being a little terrifying being wheeled through narrow corridors, desperately afraid of bumping my head. (Side note: I'm still crazy proud that I was able to walk to and use the bathroom in that room just a few hours after brain surgery and I now have a story that tops all 4 of my awesome birth experiences. To be fair, birth *can* be very natural. There is *nothing* natural about brain surgery.)
3. The stitches that I swear I was told several times would be staples. I don't even know if there's a huge difference between the two but I swear I heard staples and I did see a few fall out so there had to be a few there. Right? RIGHT? :)
4. I was never going to have a room to myself the first night recovering from actual, literal brain surgery. The person who told me that was never right about it. I didn't actually get a room to myself until 2am my last night there and that was mostly a fluke. (In fairness, the hospital was crazy full and also appeared understaffed but the inability to change rooms affected my recovery and what I was "allowed" to do or not do, not for medical reasons but for logistical ones.) I still think someone could have removed my IV and arterial line (I still hurt just thinking about those and the bruises they created) but it wasn't "allowed" even though they were out of use for at least a day. (Fortunately, the arterial line never had to be used.) I promise, nobody on the medical staff was remotely concerned about this but I am still irrationally angry about it.
It's nobody's fault that these things didn't happen exactly in the way I was told to expect them and the irrational anger I have about them is clearly on me. My therapist says it's a pretty clear case of desperately wanting some sense of control at a time when I clearly had none - and that it's a normal response to the stress I was under. (It may also be a reflection of who I am as a person but we can discuss that at another time. ;) )
I thought I'd be past it by now but boy, was I wrong. And worse yet, the surprises just keep coming but I'm getting (slowly) better at learning to roll with them.
The first is my hair loss. According to thebraintumorcharity.org, short-term side effects of stereotactic radiotherapy can include tiredness/fatigue, nausea and dizziness, tenderness, headache, hair loss (but it notes that this rarely happens unless your tumor was near the surface of your skull in which case you may lose "just a little bit," and seizures. (Also, yes I did just include a citation because that is what we speech people/Professors DO, ok? :) )
So the bad news is that my hair loss is a pretty rare amount (the "quarter size" I was expecting is easily at least the size of a dollar bill) and honestly, it has really tripped me up in figuring out how to handle it. The good news is hair -- while so important to us -- is also just hair. Of all the possible side effects, it's the only one I've noticed from the radiation and it's not seizures, which would arguably be worse. (I had 4 seizures over the course of 4 years as a teenager and to this day, the thought of having another is traumatizing.) Today I took a big, brave step and visited a wig shop in town. They agreed that my bald spot is in "pretty much the worst spot it could be" in terms of its current appearance and what it's going to take to fully grow it out, but also that I haven't lost enough hair to warrant shaving my whole head. They came up with a pretty good solution but I need to think about it a little more. Will I actually wear a wig? I'm not sure. On the other hand, I have a wedding in April and my daughter's graduation in May. I can only wear (and stand to wear) hats for so long. But a wig? Really? Who am I trying to fool? (Spoiler alert: nobody. I fully realize that everyone around me will know it's a wig.)
Next, I learned that I'm pretty severely anemic. This could also be at least in part due to the radiation but there's also a slight concern that maybe I have some kind of slow, barely detectable GI bleed so next up on Shannon's menu of fun in 2025 is a colonoscopy! Bright side: I may be one of the few people to undergo this test with a reasonable assurance that we won't be finding cancer (since that area has already been scanned and cleared a few times already.) In the meantime, I'm taking iron pills and while I'm not thrilled to have yet another medication on board, so far this one seems to be helping a lot and it definitely has me wondering how long this has been an issue.
Out of an abundance of caution, I also was recently tested to see if I may have the same bleeding disorder my dad had. My dad wasn't actually properly diagnosed until he was 50. When they found his cancer, they sent him to the Mayo Clinic because cancer and a bleeding disorder is a special circumstance. At Mayo, he learned that he had been misdiagnosed his entire life and he actually had von Willebrand's disease, not thrombocytopenia. I won't pretend to be an expert on these but in a nutshell, thrombocytopenia is low platelets while von Willebrand's is platelets that may not necessarily be "low," but they stick together and don't function exactly as they should. I do show what I would consider to be a few "symptoms" similar to what my dad had (mostly the easy bruising and sometimes longer than expected bleeding) but my platelets are generally reading high. In any case, I was tested when I was very young but since we're not even sure I had the right test, we did that again. Results should be back maybe by next week. I have no idea if a positive test would affect anything else right now. (For what it's worth, it really never slowed my dad down a bit.)
And FINALLY - I *thought* I had sailed through the first round of immunotherapy free of side effects but then almost two weeks later, I developed my first in my lifetime rash. It is literally face to toes and it is ITCHY! I was able to get in to my oncologist's office on day 3 and got some sweet relief in the form of allergy pills, steroids (a short stint only for now thank goodness!) and a steroid cream. She also gave me something for the lingering cough I have (a side effect of the first blood pressure medication or the respiratory illness I had over Christmas? Who knows?) and it's helping so much. Being able to get sleep at night makes such a difference in getting through my days and feeling better equipped to handle these surprises!
I really thought that once I got through the surgery and radiation, I'd be basically home free with the treatments. Maybe that was just what I needed to tell myself to keep going, or maybe I really was just being naive. I certainly didn't expect to have so much of my physical appearance altered in such a short amount of time and I'm a little unsure of how to best handle it. There's a part of me that doesn't want to look "sick" and there's a part of me that doesn't want to hide what I'm going through and those two sides are locked in a seemingly endless battle. (Hence the wig dilemma I find myself in.)
Mostly, I wasn't expecting these physical changes right before I went back to work and I'm a little frustrated by that.
Maybe sometimes it's better not to know exactly how things are going to go in your life, and I mean that in a basic, detailed way and a more metaphorical sense. Despite these small hits (and in the scheme of things, they are still very small) my attitude has remained mostly very upbeat. But I also want to be real and say that doesn't mean there aren't hard hours and occasional small pity parties. They definitely still happen and a few of them have happened in the last few weeks as the reality of how long I'll be doing all of this really sinks in.
I have bad moments but I've yet to have a truly bad day.
I keep telling people that I'd be feeling great if not for all the side effects of the various drugs I'm taking (seriously, Walgreens could give me a punch card by now!) but in the bigger picture, this - like the hair loss and the rash - is just temporary.
And it's worth it. Life is amazing and it's worth it. So, we keep rolling along and we take the surprises as they come.
I'm going to attach some photos so consider yourselves warned!
Yup, it got worse! Nothing has changed for about a week now and it's been 2 weeks since it started, so fingers crossed this will be all of it. The back spot had some thinning too, but the majority is right here, front and center on my head. I love how even the new growth (you can see it in the front and back of my scar) mostly just fell out after radiation. I honestly have NO idea how this is going to look as it grows back in and eventually I will probably try a shorter cut to help even it all out but if I had to guess, I'm still a solid 6 months from that cut. I've also had some strange feelings of tightness (most likely swelling from radiation) and a few areas that feel a little "numb." I'm assured that all of this, along with some occasional "zingers" (sharp, stabbing pains that are over just as soon as you notice them) are still very normal. So far everything is very manageable with pain meds and actually it's been a few days since I've taken any. But all in all, radiation is NO JOKE! These effects can easily go on for the next 6 months and those spots are often hot to the touch.
My first ever rash! It literally covers almost every part of my body right now - in some places it's heavier than this and in others, it's more spotty. The most likely culprit is the immunotherapy drug Yervoy, which is currently being given to me in combination with Opdivo. I'm not going to google it (and you shouldn't either) but I've been told by several different people that these drugs have only been available for less than 5 years and have showed considerable success in fighting melanoma. I'll still have 3 more doses of this combination before we look at (hopefully) dropping the Yervoy, which should (fingers crossed) also take care of the rash. This looks rough (and it was!) but I've gotten pretty fast relief with steroids and antihistamines so I'm hoping I'll be able to push through the next 9 weeks or so managing this. My nurse practitioner said this combination has been proven so effective that it's worth trying to push through and that was all I needed to hear. Immunotherapy doesn't cause hair loss (unlike chemo it doesn't target all of your fast growing cells) but it does share several other potential side effects with chemo like nausea and vomiting, fatigue, etc... I have a prescription for anti-nausea meds but haven't needed it yet. Fingers crossed it stays that way!
I think I'm more embarrassed to share this photo than I was to share the first one but we're in pretty deep right now so why not? It was truly so, so hard for me to walk in this wig store today. I did not want to be there. But that feeling of not wanting to be there is outweighed by how much I hate wearing hats. Luckily, I was met with very kind and compassionate people (which makes me wonder just what percentage of their clientele are people with cancer because I'm betting it's really high and I know it's not just women.) They suggested a topper piece and even found this one that I think really matches my hair color. It clips in so one of the clips would have to be removed until I get enough hair grown back in that area but in all, they agreed that this is likely the best solution given where my hair is bald and where it's not. It's a pretty hefty purchase (actually, so many people have warned me about the cost of wigs that I was prepared for it to be more) but I'm seriously considering it. There was absolutely no pressure to buy it today, which I also really appreciated. Also, I want to say this wig was definitely giving Jennifer Anniston even though this photo doesn't really show it. (Side note: it's not easy to see but my make-up is definitely covering a lot of the rash on my face. The rash is raised though, which makes things look distorted and odd. Not a way I'd recommend looking on your first day with roughly 50 students but I got through it with a smile!) Plus, I told them all of this means I may sometimes be wearing funny outfits (to cover the rash) and I'm just so proud I finally found a way to justify my old lady clothes. :)
In short, these days I constantly find myself having to operate outside of my comfort zone. I've gone from being someone who rarely took any meds to someone who now takes several every day. (Yes, I have even bought a pill organizer and no, I'm not sure it's big enough.) I had never been hospitalized or had any kind of surgery, now there's a big scar down my head and titanium screws holding my skull together. My biggest fear was losing my teeth but now I'm missing a molar. I didn't think I cared all that much about my hair but now I'm understanding how much it is tied to our sense of self, health, and well-being. Having an itchy rash just plain sucks, and the thought of leaving the house with any of it showing is just, well, kind of weird. (At least those of you reading this will know why you see me scratching my body out in public. ;) ) But ultimately, I believe this all serves some kind of greater purpose and I plan to just keep sharing about it while I work to figure that out.
I am a work in progress. :)
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