Just Keep Swimming...

Today has been a tough day. 

My brain surgery was 3 months ago today. 

Today I had my third immunotherapy treatment. 

I have also cried 3 times so far today, including one total meltdown at my unsuspecting husband who was just trying to tease me about something and instead learned the hard way about time and place. 

There's something weird about the symmetry of those things, and the just the number 3 in itself. I've always been told it takes doing something in patterns of 3 to make it a habit. I don't think it should apply to when you're living with a cancer diagnosis, but here we are. It's really feeling real, even though nothing about me *feels* sick. Every time I go to a doctor they ask me if I'm having any pain today. Every time, the answer is "no." 

When I went in today, my initial blood pressure reading was 160 over something. I'm on meds for blood pressure now and I've been monitoring at home as we work to adjust the dosage so I knew that number couldn't be accurate. But there was no time to try it again before my appointment so I just mentioned that I was feeling anxious about meeting yet another new person, as today was my first visit with this particular nurse practicioner. (As predicted, it was just fine when I took it again at home.) 

Let me be clear -- she was absolutely delightful and I never doubted she would be. But three months in to this terrible roller coaster I never asked to ride, I'm just so weary. I yearn for a bit of predictability and one thing I've learned is that different practicioners (even in the same office) often have different thoughts or opinions about my current health. I went in mostly expecting to add back in the second drug (Yervoy) that we skipped last time because it caused such a bad rash after my first treatment. I'm not saying I *want* to experience a rash like that again, but statistically the effectiveness of these treatments is about 10% higher if you can get (i.e. tolerate) both drugs at once and you only need (can probably tolerate) 4 doses of the Yervoy to get there. But a rash (and the need for steroids) can also lessen the overall effectiveness, so it's a balancing game. 

Ultimately, the practicioner today left the choice up to me so I chose to move forward. This way, I'll have at the very least gotten 2 doses in, which is better than 0 doses. Last time it took about 2 weeks for the rash to appear so now we just wait. (I'm going to Florida in about three weeks, so the risk of a rash was calculated in to that too and honestly, this was just clearly the best time to try a challenge like this.) 

At the end of my appointment as I was heading to the treatment room, she mentioned to me that it's probably more likely than not that my hair will never regrow. That was the first time *anyone* has ever said that to me so starkly. (And let me be clear, it was said with care and concern.) I had truly, truly, never even considered that possibility before. I first was operating under the assumption that I might only lose a small amount of hair, then when I did lose so much I assumed that it was just going to be a matter of time (and probably a long time) before it came back. Nobody had ever warned me ahead of time that it might be this much and it might not ever come back. 

And so, during the treatment today, that sunk in. And what's funny is that just a few days ago while we were still relishing in the good news of a clear MRI (oh wow, is that burying the lead? I posted on FB but the short version is that my first 3-month post-surgical MRI was all clear and showed lots of healing and no new tumors or regrowth) I actually said out loud that if I can get through all of this and only have lost some hair, I will be so happy. I really felt and meant that at the time. But today, it just hit differently. I don't have a plan for how to live without half a head of hair and I was just counting on it continuing to slowly regrow and be annoying and itching (it is actually really itchy so maybe that's a good sign?) and maybe even a different texture but still just THERE, you know? It feels almost cruel that one of my truly good features and one of my truly good talents (talking!) are the two things that have been most affected in all of this. I'm sure there's a lesson/message in there, but that's a blog for another day, further down the road. 

And then I start to spiral a bit and judge myself for being so vain in the first place because when I first came home from brain surgery I wasn't sure I'd even have these 3 months to live and just two days ago an otherwise healthy friend from high school died while out hiking and another friend who was even younger than me died last month after a failed organ transplant and geez, why can't I just keep counting my blessings and stay positive instead of growing so weary of it all because the world is SUCH A HEAVY PLACE RIGHT NOW. 

And then of course, I remember that it's also ok to allow myself these moments - that I am grieving and these are all signs of that and in order to make space to enjoy the good moments, I have to also allow space for the dark ones. Last week as I stood in the changing room getting ready for my MRI, I felt so panicky. It had been building up slowly in the background of my life for days and in that moment, I knew I needed support. I didn't want to ask for prayers (I'll psychoanalyze that another time too) but I did post that I was tired of being brave and I needed others to do it for me right then. 

And OH MY GOSH - the way my people responded to that post was just UNBELIEVABLE. I didn't even see the responses until after the MRI was done but I promise I felt such peace during that procedure that it's impossible to deny there is something about the vibes and energy we put out into the world and the power they can have when you need them most. 

The news from that MRI was almost embarassingly good, so much so that we've had trouble letting ourselves truly embrace and bask in it because if the past three months have taught us anything, it's that unpredictability is the name of the game. You're almost afraid to celebrate any "wins" too much because you don't want to taunt fate. 

I've had lots of talks with my counselor (who I started seeing as a result of this diagnosis) about my need to have some control over things in my life and the way this cancer diagnosis has upended pretty much all of that. So far I can't say that I've had any earth-shattering revelations in these sessions, but it's really nice to talk things through with someone as I work to process it all and I'm relatively certain she has no idea who I am (no small feat in a town like this!) so that helps too. I do think however that it's very possible I would also benefit from some kind of anti-anxiety medication but so far I've met nothing but resistance on prescribing any of those and if I'm being honest, it's probably my biggest complaint right now. I've never been one to take a lot of pills, so it feels like it was a big, vulnerable step to even ask and now I'm just quite frankly pissed that nobody will give them to me. 

To be honest, right now I don't even think I would take them if I did get them, but I want the ability to make at least one damn choice about what's going into my body right now, you know? I'm exploring other options that have been suggested that are probably actually better for me anyway (please, please don't come at me with more suggestions because its honestly so frustrating when people do that right now and I am already overwhelmed. I used to be so focused on doing things a more natural route and some of those things have been suggested ((side note - melatonin gives me MORE anxiety so especially don't suggest that!)) so I just need some time to sort it out.) 

I also learned last week that it is virtually impossible to get a colonoscopy scheduled in our area -- yes, even if you have been referred by a PCP (Edgar was referred at the beginning of January) OR your oncologist (as is my case.) Luckily, my hemoglobin is up just enough that I'm no longer considered anemic and while my iron stores aren't increasing quickly, they are technically increasing. So the situation is far from an emergency and we've got some ideas on how to proceed -- but in all, it's been one more very eye-opening experience of the state of our healthcare system. 

One more little thing to get off my chest before I wrap up this very rambly update (I mean really, do I even NEED therapy if I keep this up? :) ) is I just want to be sure that everyone understands I do NOT have brain cancer. 

I don't blame anyone who may make this mistake (and it's happened more than once, hence my need to clarify here and don't worry, I also double-checked it myself!) because "tumors in the brain" sure does sound like brain cancer. I don't even know how they knew, but I feel like even the doctors in the hospital figured this out pretty quickly, long before there was any pathology to confirm it. I know for certain my neurologist correctly predicted what it was both before and during surgery. I have melanoma (of a still unknown origin) that mestasized (turned into) tumors in my brain. Primary brain cancer/tumors is a different monster all together. I mean, don't get me wrong -- it all sucks, but some things suck worse than others and in this one case, I'm on the better side of the suck equation. 

As I was writing this, our dogs started to quietly growl at something outside. I finally went to investigate (because it's way too cold for anyone to be just walking or jogging by) and I saw this. For some context, you need to know that when my dad was dying, I told him some things I would watch for as signs from him, and one of them was geese. For whatever reason, these geese (who I can't recall ever doing this before) were gathered outside my house right now. For my dad, geese were generally a sign of hope - - their return in the spring signaled that the winter was past and new, better days were coming. 

This was the third thing that made me cry today, but this time they are happy, maybe even relieved tears. 

Today is a tough day.

Tomorrow will be better.

Working toward my new normal

Yesterday, my husband posted a photo of us together at our daughter's sectional cheer competition. And for some reason, I just absolutely hate it.

I've been reflecting a bit on why that could be, because generally these days I'm in the "just happy to still be here and alive" category a LOT more than I'm in the "care what I look like when I leave the house" category. Or so I like to think, despite what is probably a lot of evidence to the contrary.

Let me be clear: I am not doing chemotherapy. I have crazy, mad respect for anyone who is going through that or who has. I don't think chemotherapy is ever going to be a viable (or rather, truly worthwhile) option for my type of cancer so there is that to consider -- not doing chemo is not the flex it may seem like. Then again, I'm also learning to never say never these days, so who knows? And while I'm not doing chemotherapy, I am finding that often some of the side effects of immunotherapy can be just as hard to live with and I'm expecting to be on immunotherapy for at least a year. So that's not nothing, you know?

But as I've discussed before, I was initially relieved that I wouldn't be losing my hair. One thing my dad always used to say about me that really, really bothered me was that I was vain. Meaning, I cared too much about my looks. He wasn't wrong but I don't think he really understood where that was coming from, which was primarily an underlying insecurity that frankly, I still have today. Luckily, just the process of turning 50 has helped curb a lot of my "give a damn" but it still exists and I can't think of anything better at dredging it up than a cancer diagnosis and treatment path. It is still true that I would much rather blend in than stand out. That's hard when the whole world knows you have cancer.

And right now, I do not *feel* sick. At all. So seeing any physical, outward signs of that fact that I *am* sick is really hard to bear. Sure, I am dealing with a lot of issues but they are all, to my knowledge, side effects of the various medications I am taking for both the melanoma and a few other issues (blood pressure, anemia.) It's a slippery slope and I kind of hate it here, but what choice do I have right now?

I guess what I'm trying to say is that I understand I have cancer. I just don't want to look like a cancer patient. 

As of a few weeks ago, I hadn't really lost any weight at all. (There is always fluctuation when I am on or off steroids.) But that didn't stop me from getting a pretty stern lecture a few weeks ago when I told a nurse practitioner that I was struggling to eat because nothing ever sounded good to me. It's not that food itself doesn't sit well or that I have any issues with feeling nauseous (meaning I still haven't needed the anti-nausea meds that were incorrectly prescribed in suppository form and Edgar paid $45 for before we figured it out - yikes!) but in general, my appetite just isn't what it used to be. This is just yet another result of the immunotherapy and something I need to push through.

It turns out, the solution to this has been pretty simple. I just needed to get back into a set work routine and instantly, I found my appetite. Something about knowing you have to eat at certain times of the day or you won't be able to at all is very motivating! So I feel like I'm in a much better place overall, minus the weekends when it's easy to wait until noon or later to actually find some food to eat. For the most part, I crave the foods my body needs (like things rich in iron) and eat smaller (i.e. healthier) portions throughout the day. I actually had gone down a few pounds the next time I went to the doctor and I don't think that's a bad thing at all because I'm eating and my body is just using the food I'm fueling it with. 

Just a quick note to add in that after 5 days back in the classroom, I feel like I've really settled back into the routine of things. I'm teaching quite a bit right now - 5 classes on Mondays with an hour break and then 4 classes on Wednesdays and Thursdays, but being able to offset it with work from home/prep days is exactly the schedule I need right now and I am finally moving past the initial "oh my gosh, this is a lot now that I'm just jumping back in" stage. It feels SO GOOD to be on this side of things and I just hope I'm able to maintain it all semester! Our speech season is also going well and although I still feel like I'm not fully pulling my weight after coming back late season, I know the other coaches have my back as we head in to the crazy busy state series these next few weeks. In short, my work life was much missed and is much needed and I'm so thankful to have it back!

I also want to make mention that I was tested for von Willebrand's disease a few weeks ago. It's a hereditary bleeding disorder that my dad had, although he wasn't diagnosed until much later in life after spending most of his life being told it was a different type of bleeding disorder.  (Somewhat ironically, he didn't get the correct diagnosis until he was diagnosed with cancer and sent to the Mayo Clinic because doctors here were unsure how to manage those two things. It was the Mayo Clinic who correctly diagnosed him. Given how many other parallels I've had to my dad's experience, you can see why I was a little nervous that something had been missed all these years.) My grandparents were also told when he was born that he might not live past the age of 4 so it was kind of a big deal back then. My mom says I was tested when I was 2 and I'm sure I was tested for something, but it's hard to know if it would have shown von Willebrand's since nobody was looking for that, you know? Also, it's rare but it can develop later in life so it seemed judicious to check it out and there were no signs of it. Another potential hurdle cleared.

My other BIG news is that I ordered the wig topper. One day after work last week, I visited a wig shop in Peoria that is, from what I understand, the gold standard of places to go when you're a cancer patient. (I think it's likely a great place for non-cancer patients too but there's no denying we are a sizable portion of their clientele these days and it's not just women.) I mustered up my courage to walk in (which was hard but honestly made me feel more like my "old self" than just about anything else I've experienced lately because again, what choice did I have?) and asked them for some education on what my options might be.

It feels worth noting that the man there was very validating, basically telling me that "yeah, this kind of sucks. You've lost enough hair that you need something, but not enough to justify shaving the rest off. And you lost it in pretty much the worst place possible." At first I wasn't sure if the wig topper was really going to be right for me, and I wasn't totally sure I would really even wear it. So it felt really good when he assured me that "this is NOT an impulse buy, you need to take photos and talk it over with loved ones and decide for yourself if it will be actually helpful."

I finally realized that I'm not trying to "fool" anyone. Literally everybody is going to know that it's a wig and I'm 100% ok with that. I am NOT 100% ok with continuing to wear hats (God I HATE hats so much and they are just not "me") for the next 6-10 months so earlier this week I called and ordered the wig. I guess you could say I consider it to be the lesser of two evils. I never even asked the exact price (because does it even matter?) but I know it's between $500 and $600. This will be a synthetic wig, so less overall maintenance but also not something I can style with heat (i.e. no curling.) Honestly, there is a whole world of wigs and their care that I didn't know anything about until that day! I look forward to better hair days soon, and maybe avoiding more days where I see photos of myself posted online and cringe.

Here you can see the pieces in the front and then further back that are the grow-out I've had since surgery. That was Nov. 18, so this is essentially about two months of grow-out. I think that's actually really good for only 2 months! My hair has always grown super fast and been really thick, so I understand that most people probably don't really see the overall impact this has had but please believe me - about 1/4 of my head is now bald and somehow, that has made my hair less than half as thick as it once was (something that becomes very evident every time I try to put it in a ponytail or some kind of messy bun on top of my head.)

A lot of what had already started to grow out then fell out as a result of radiation, along with everything you see to the right. There is also a big bald spot underneath a very thin section that (thankfully) still starts up at the crown of my head toward the back here. This is definitely taking longer to come back in now, though there is a pretty good line along my incision (aka my "badass head scar) that is growing pretty quickly. Next to it though (that big bald spot) is definitely taking more time. Believe me, I check it every day because even though I understand radiated hair can take longer to come back in, it's also possible that it may never come back and I'm not yet mentally prepared for that possibility. I do think I'm finally feeling a little bit of peach fuzz like hair there though. so fingers crossed that's what it is! I am taking Biotin because I figure even if it doesn't work, maybe the placebo effect will kick in. Also, it feels good to take a supplement in my daily line-up of pills that *might* actually help this situation. In short, I couldn't do *nothing,* so this is what I'm doing.

This is currently the back of my head, which of course I never see so even to me, this was a little jolting. Basically, I didn't lose as much hair here from radiation so most of what you can see is the new growth popping through, exactly as I had predicted/feared it would do. Even so, if I hadn't lost so much other hair, I'm confident I'd have been able to easily cover this up and blend it together. And also, there is a part of me that thinks this is really not a big deal because what I have been through is and deserves to be "seen." Remember, my incision starts at the top of my head and then curves down and over on the left side to just above my ear. 

The Facebook picture I kind of hate. I think it might be because you can't see my hair, even though it's tied up in a cute little bun in the back of this hat (which also has a little bow.) Maybe the issue is that I thought I looked pretty good leaving the house but this is not what I thought I looked like. There's some puffiness I don't understand. It's like hearing a recording of your voice and wondering who that person even is?

Photo taken last week at work so I could show Aidan how I was representing for the day. Much better. 

Fighting Pretty -- how my students teach me so much every day

Truth be told, I wanted to be a teacher for most of my life.

I'm not sure exactly how or when I let that dream slip away or if it was ever even really something I truly conceived of as a possibility but at the same time I was planning to have a career in nursing (from Kindergarten until high school that was the plan) I was also setting up schoolrooms in our basement and teaching stuff to my dolls. (I don't remember what it was exactly but I'm almost certain it was never math.)

At the end of each semester, I usually give a speech to my students and often I tell them the convoluted and twisted path that led me to teaching at Bradley. It's partly a story of warning about the dangers of not following your heart and partly an inspiring story about staying open to the many twists life will offer up to you. And mostly, it's a story about accepting that our lives are often directed by unseen forces and sometimes the best things we can do are surrender to what the universe has already decided for us. (My husband hates that idea but I've always loved it.)

Last fall, I made a visit back to campus the Friday before my scheduled brain surgery. I was still having a little bit of aphasia symptoms (trouble completing sentences at times) but otherwise, I looked and felt mostly "normal." I really wanted to see my students -- many of whom I had grown especially close to -- and most of whom had had very little information about what was happening to me. They gave me a small gift basket (I've used everything in it over the past two months!) and wished me well. I made a promise that I would return -- hopefully triumphantly -- in two weeks for their last day of class. Having that plan gave me a sense of hope and purpose and something to look forward to AS (after surgery.)

I also remember sitting in the office of my course chair, confidently expressing my plan to return to teaching in the spring. Truthfully, I knew deep down that while I most likely *could* do it, some of what I was expressing was just pure bluster or stubbornness. But by then, I'd seen my students and felt the deepest sense of connection and obligation I could imagine so I knew I had to really, really try to come back. For them, of course. But also for me.

I had fears that cognitively I might not be able to swing it. I work with truly BRILLIANT people and here I was, having trouble finding words and writing and typing. (Those are three pretty important skills for professors who teach public speaking. ;)) I never had any doubts that I wanted to return, I just wasn't sure if I should. And honestly, I was at peace with that possibility in a strange way I had never expected. I've had a great run already.

I contemplated resigning from my position as the Assistant Honors Program Director for probably a month. I didn't *want* to leave it but I knew I probably should. It's a big job for one person and I had left the Director alone for so long already. I knew she wasn't upset about that but I couldn't get past the unfairness of it all, to her. It was a busy time of year for that job and she'd already been hit with some other unexpected duties that were also nobody's fault but extra work for her nonetheless. After so much back and forth, I finally messaged her that I needed to step away and then that opened up the possibility for me to message the students in the program and give them details about all that had and was happening. In return, I received a bunch of e-mails and several cards that students gathered to sign with amazing, encouraging, and inspiring messages. One student wrote, "When the art of medicine is loved, there is love for humanity"- Hippocrates. That one is going to be framed. Unbeknownst to me, a care package was also delivered to my staff mailbox -- more on that in a minute.

When I returned to the classroom yesterday, I encountered many students who did know what's going on in my life and many who didn't. So I got to be the fun professor who basically trauma dumped on them for a few minutes. I believe that college students deserve to know their professors on a pretty deeply personal level (they also got "introduced" to my family yesterday because they'll be hearing about them for the next 16 weeks so I just own that) and it was imperative that they know what to expect from me going in. I never know when I might get hit by a surprise during these treatments so I wanted them to be aware and prepared to be flexible in case I need to cancel a class or change our schedule. I also explained that I'll likely always be wearing some kind of hat and maybe a strange looking outfit because I'm covering up a rash.

I don't know if I even truly have the words to express the amount of care, concern, and empathy I felt coming back to me as I explained my situation. Knowledge is power and I suspect they appreciated having the facts straight from me. I've found that today's younger generation generally craves authenticity from others and luckily, I don't really know how to be anything but open and vulnerable. In each class (minus the one I missed, which is another story that will now go down in my "because of brain surgery" lore) I asked if anyone had any questions. And in the second class of the day, a student raised her hand and asked if I had been awake for any of the surgery. That's a GREAT question, and it's one I've been asked a lot and I'm grateful the answer is "no."

Then another student (whom I've had in class before) raised his hand and I'm paraphrasing but this is essentially what he said: (I got his permission to share this but I'm not using his name because he is a current student.)

"I don't have a question but I just want to thank you for being here, for coming back this semester and teaching us. I really appreciate what you're doing and what you're going through to do that. My mom is in a similar situation right now and she's also a teacher who plans to keep teaching and I just really appreciate that you're here."

Pause to read that again please.

When I tell you that I teach the MOST amazing people, this is what I'm talking about. Take a moment and try to imagine just how powerful that was in the classroom yesterday, how much it helped to heal my heart, how much it helped to convince me that despite my initial fears or concerns, I am in exactly the right place right now. (Also, reflect back on the students I had to unexpectedly leave last semester and try to understand how devastating that really was, something I'm not sure I've even fully processed yet.)

And that's not all. 

When I checked my mailbox in the morning, there was a care package there. Our admin told me it had been there for a few weeks and she had forgotten to tell me (I've only been in a small handful of times so not a big deal.) She said a student had brought it, saying she had reached out to my husband and that was his suggestion for getting it to me. 

The package (pictured below) is filled with small items as part of the "Fighting Pretty" campaign, which I'll link to at the bottom of this post. After reading my message about my resignation and diagnosis, my former students Anaiah Davis and Maddy Mirallegro (names shared with permission) had taken it upon themselves to put together this amazing, inspirational care package. (I was able to track down their identities through Edgar, who still had the original message but had forgotten to mention it to me. Which is also totally fair because it came in at a time where he was bombarded with messages.)

I imagine it would be possible for these young ladies to be a little disappointed that it took so long to get to me, but as I explained in a "thank you" e-mail to them, the timing could not have been better.

Initially, I wasn't really worried about my appearance. I covered my scar easily, I knew I wouldn't be losing my hair to chemo, and I hadn't gained or lost a drastic amount of weight. It was so easy to pretend I wasn't fighting the battle I'm in and feel largely "normal" on the outside while the emotions and anxiety churned away on the inside.

But that has all changed. In just the last two weeks I've lost a significant amount of hair, a TOOTH (I mean, seriously - that's just INSULTING!) and then I developed a pretty extreme full body rash. It's safe to say I was feeling anything BUT pretty as I headed back to the classroom. I think I was downplaying the importance of these things (how you look doesn't define you, right? Except when you're sick, sometimes it just really does.)

And yet, there in my mailbox was an act of unbelievable kindness from two empathetic souls who couldn't have possibly known how much I needed that at that very moment. 

I've said it before but now I understand it on an even deeper level than would ever have been possible without all of this (gestures wildly) that's going on around me. I have the BEST job with the BEST people and I am so grateful they are all a part of my --  unbelievable and overwhelming and sometimes I just can't believe I'm this lucky in this life to have them all --  support system.

My first day back was one I will NEVER forget.

More info on "Fighting Pretty"

Rolling With the Surprises - Hair loss and rashes and low iron, oh my!

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. :)

Some bad hair days are coming!

I finished radiation treatments (gammaknife/stereotactic) two weeks ago today. Honestly, everything about that process was easy, quick, and painless. In fact, it was only three treatments over the course of a week and I quickly became so attached to the incredible nurses who took care of me each day. This journey is teaching me so much about the amazing people who work in these places and they were just some of the absolute best. 

 Heading into these treatments, both my cousin Mike (an oncology radiologist) 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.