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.