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.