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.