Carry On! - One Year in the Clear!

A year ago today, I came home from my hospitalization after brain surgery and got this weird idea that I should be saving the ID bracelets from hospital stays and treatments throughout my journey. I think that in my heart, it felt more respectful of the process than just throwing them away (and I wonder why I have sentimental hoarding problems?) so I started a ritual. Every time I've gotten one of these (and when you are a cancer patient, it happens a lot!) I simply take it off and put it in a bag hanging in my closet.

I think I was envisioning that someday in the future, I would be able to just use them for some kind of photo to exist as a form of art, a reflection and salute to the teams of healthcare providers who have gotten me to this point. I didn't really have a set idea for this vision beyond that, but when the one-year anniversary of surgery hit this week as I was also getting my regular 3-month MRI AND my monthly immunotherapy, it felt like a good milestone to document.

So, here it is:

It's intentionally a bit blurry but I did take the time to center the bracelet from brain surgery, though that's the only attempt I made at any kind of positioning.

I really like this photo because to me, it symbolizes how far I've come and how hard I've been fighting and I think that sometimes maybe I just don't even give myself enough credit for that. I still have so much anxiety around anything medical-related, so every time I walk through the doors of a medical facility of any kind, it represents my overcoming a fear. When I look at this photo I'm reminded that it is ok to succumb to a certain acceptance of your life's circumstances while still maintaining a sense of choice and self. 

While I was in my treatment earlier this week, I received two texts from students. One was a college student I advise and the other was a high school student I coach and both had things they needed at that very minute. At first, my internal dialogue went something like this: "Ugh. Don't they know that I am in the middle of something right now? (Of course they didn't, but since when is internal dialogue ever rational?)" And that thought was immediately followed by "how lucky am I to be in a place where my students again take my health for granted. This is what I hoped and prayed for a year ago."

A year ago, I had three classes of students whose semesters were upended with my diagnosis and then absence from campus. Visiting them both before and after my surgery was one of the best decisions I made (ok, I'll give my husband credit for pushing those visits) because it gave me added fuel to persevere. Looking back, I'm amazed to realize that through this whole ordeal, I only missed about 7 days of classes. (And my employer was incredibly kind in handling those days.) But, 7 days! That's all! (This is because the universe was kind enough to line up my diagnosis/surgery/recovery with the semester break but still...) I'm about to finish my second semester back and I haven't had to miss a single day because of anything related to my health (not even a normal "sick" day!) and I am feeling beyond grateful for that as well. 

So, following the results of my last MRI a year after having those tumors removed, tomorrow I'm taking in a bunch of cookies and inviting both current and former students to celebrate "one year in the clear" with me. I especially wanted to include those students whose semester was so horribly interrupted last year because they are a part of this story too and they deserve to celebrate this milestone with me.

The bracelet collection is FAR from complete so I'll just keep adding to it -- with a heart full of gratitude for each and every one.

On the Occasion of my 51st Birthday

On the morning I turned 51

I woke and turned to see the sun

The sound of geese honking was one of the first things I heard

As I closed my eyes again and quietly said, "thank you."

I have been surprisingly emotional as this birthday crept up on me. And I realize that it's probably strange to say "surprisingly" but here we are. 

Here's the thing -- even in the darkest depths of the valley I faced in the past year, I never once actually doubted that I would survive. I just didn't know exactly what surviving was going to look like. (And of course, I often worried that really I was just being naive to the realities I was facing.)

I remember writing at the time (and telling some people) that one of the reasons I was so confident that this was not yet the end of my story was that my dad never sent me any signs. There were no dream visits, or anything that I could in any way interpret as a message that he would be seeing me soon. There were a couple of metaphorical things that happened that told me he was close, but keeping his distance so as not to spook me. And it gave me a lot of comfort and the fortitude I needed to keep going. Some people thought I was saying that my dad had abandoned me, but it was quite the opposite: my dad was letting me know that I could have the audacity to hope. Maybe I would have had it without that -- maybe it's just in my DNA. 

Recently I did have a dream about my dad. I don't remember the details and it wasn't what I'd consider a "visit" dream -- I just remember waking up and feeling happy and also content because it feels as though the storm has passed and it's once again safe for him to make himself known in small ways around me. The first time I woke up this morning was almost the exact time I was born 51 years ago (my mom used to call me at that time back when I was in high school) and then the second time, I heard the geese. 

Yesterday, I heard "Landslide" (Dixie Chicks version, which is arguably the second best version that exists) on my drive home and that set off a good, cathartic cry like I haven't had in a long, long time. I've come to realize that the older I get, the less I miss my dad on the "big days," and the more I miss him on the days like today. I've now lived 1/4 of my life without him. 

But this post/therapy session isn't really even meant to be about my dad - because really what's been heavy on my heart in the weeks leading up to this very significant birthday (arguably this is way more of a milestone birthday than 50 was) is just how very, very lucky I am to still be here. Period.

Life is so, so fragile. For all of us, regardless of any other circumstances we may be facing.

Just in the past few weeks, our community has experienced several devastating losses -- two I can think of off the top of my head were people younger than me, not sick. One was a tragic accident that rocked most of the people living here and the other, a sudden and unexpected loss that touched so many in my circles. The older I get, the less distant any of this feels.

We went to Kouri's the other night after Ainsley's volleyball game for a late dinner and the place was mostly empty except for a table near us. The women were talking quietly amongst themselves about someone they know who has been diagnosed with cancer. They weren't being rude or disrespectful in any way, I want to make that clear. And they were talking quietly, I just happen to have supersonic hearing sometimes so I was able to pick up on a lot of the conversation. And suddenly it dawned on me that a lot of people probably were having that exact same kind of conversation about me just a few months ago. It felt unnerving, and also somehow reassuring. 

I've also been thinking a lot lately about the nitty gritty details of my surgery. Wondering what it looked like as they did the actual physical things required for a procedure like that, wondering what I looked like lying there on the operating table. Maybe one day I'll look for a video of a craniotomy but I'm not there just yet. :)

As we inch closer and closer to the 1-year mark, it's just so reminiscent of how I felt when we reached the 1-year anniversary of my dad's ordeal. (His heart attack was Nov. 1, my diagnosis was Nov. 5. We both had major surgery within a day of each other on the calendar.) Just like in 2009, the changing of the seasons has me (and, apparently, my sister...) experiencing things on a physical level that are hard to explain, like our bodies somehow just internalized the trauma. Just like in 2009, I'm starting to feel myself getting anxious to just get these dates over with and behind me. Just like in 2009, there is this feeling that if I just deep-clean and rearrange my house, things will somehow be ok. (I painted our garage doors and have been obsessively adding to the fall decorations on my front porch. My sister is painting almost every surface of her kitchen. The genetics are deep here!)

But maybe this sense of cleansing that I'm feeling is just going to be a new way of life from now on, one of the many ways I have been so forever changed by all that has happened.

I can't say I *love* knowing that I am now 51. But my dad used to say, "growing older beats the alternative" and today, I celebrate growing another year older with a new appreciation and sense of gratitude.

Another milestone I forgot to notice and other treatment room musings

Monday marked 9 months since I had brain surgery and once again, I forgot to even notice the date.

There was a time when it was inconceivable to me that I could ever pass the 18th of the month without thinking back to that day, at least for the first year. And yet now I have missed the last two months. (I'm pretty sure I won't overlook the actual 1-year anniversary though.)

Today I'm getting immunotherapy treatment #10 and an iron infusion topper so I'm sitting in the treatment room for hours on end today (maybe about 5 total before I'm done) and I have a long "to do" list in anticipation of the start of the fall semester next week so naturally, I'm taking some time to record some of my thoughts here instead.

My iron has been low since I first started getting bloodwork and after months of little to no progress with oral supplementation, today we're trying the infusion. It takes about 4 hours so today's treatment is long but also a good reminder that this is much more the norm for many cancer patients and probably the reason so many people always offer to come sit with me during treatments, not realizing that I'm usually here less than an hour.

Officially nine months post-diagnosis, these days I find myself frustrated by little things more than I ever thought I'd allow myself to be. I like to have a plan. And honestly, it doesn't even matter when things have to deviate from "the plan" all that much to me as long as I can understand the reasoning why. I'm pretty sure this is just my version of being neuro spicy and at almost 51 years old, I no longer worry about trying to change it. It's who I am.

Obviously, these past 9 months were never a part of any "plan" I had, but I think I've done a great job of adjusting and rolling with the punches, putting on a brave face (that honestly isn't for show because it's how I've felt 99% of the time during this whole ordeal) and just moving forward with what needs to be done.

But oh boy, that other 1% of the time. When it hits, it hits hard. And this week, I am just weary.

I'm weary of a healthcare system filled with people who know so much but can't seem to find a way to communicate with each other.

I'm weary of conflicting advice given by different providers in the same practice and then what basically amounts to gaslighting when I try to gingerly point it out.

I'm weary of how little we even know about cancer (and by "we" I mean the medical community) and then by extension, how little the general public actually knows about it. 

I'm tired of having to explain that immunotherapy is not just another version of chemotherapy, so most of what we have come to know and expect to be the case with chemotherapy doesn't generally apply to me.

I'm weary of the "is it side effects or is it perimenopause?" game and a medical community that doesn't know or seem to really care.

I'm weary of explaining that despite my age, I am still (to my knowledge, but see above) showing no actual signs of menopause, which also seems to make me a medical mystery to most people (medical or not) that I encounter.

I'm weary of the crash course in med school I've had to endure these past 9 months and the constant inconsistencies in what I do learn.

I'm weary of trying to decide whether I should go back to school or give up the doctorate dream.

I'm weary of people asking me how I'm feeling.

And I'm going to be brutally honest here, I don't even care of that last one bothers you or makes you feel targeted in any way. I just don't know how many more ways I can say "I feel great!" because the underlying question has to do with some kind of expectation that because I was diagnosed with cancer, I must not be feeling well. But the truth is, ever since Nov. 18, I've felt the same as I ever did. Sometimes I follow up with, "if they didn't tell me I had cancer, I'd never know anything was wrong!" But even that response is so tiresome now. 

When people ask that question, they mean "how are you feeling physically?" Or at least I assume they do. If they meant "how are you feeling mentally?" I assume they'd know they know that's a loaded question and very little of the answer is likely to have much to do with me medically. As I said, 99% of the time when it comes to my medical situation, I'm fine. 

But I get the sense that people don't really believe me when I say that or give my usual upbeat answer. And I get it, I would have been the same way before -- skeptical that anyone was actually capable of being so cheerful in the face of so much struggle. Or maybe what's really happening is that people want to believe that you feel sick when you're sick, because the alternative is that they too could be unknowingly walking around with something terrible growing inside of them. I need to think on that a little more. 

But here I am, most of the time. I worry so much more about my kids and my husband and my family and my students and covering my bases for volunteer work than I do about my medical situation. (I mean, after reading that how is there even space inside my brain to devote energy to worrying about anything else? :) ) And maybe if I'm open about these moments I don't feel so great (emotionally, not physically!) you all will better believe me when I say I'm feeling great.

Or better yet, just stop asking me all together. Because as much as I do like the attention (just ask my husband!) I think I'm getting a little weary of all that goes along with this too.

I don't feel sick and I'm weary of feeling somehow guilty about that.

I'm weary of being told I'm brave.

I'm weary of being told that I am evidence of answered prayers. (This one is SO complicated because I do believe in the power of prayer but I can't reconcile believing that I have been somehow singled out when so many others who are also being prayed for are not. I just don't think that's how God works.)

In short, I don't want to be "special" because of this anymore. :) But I don't want to stop openly sharing about it either and I'm just not sure how to move forward with those two things both being true.

I have an MRI of my brain tomorrow and a follow-up with my neurologist. A PET scan has been scheduled for October. I can't get MyChart to let go of the "you are overdue for a mammogram" reminder even though that will be my third PET scan in less than a year. It doesn't take a brain surgeon (see what I did there?) to understand that today's malaise is undoubtedly a result of this week full of medical stuff I've had to deal with and the inevitable anxiety it dredges up. 

I'm hoping that I'll have good news to post tomorrow and earn another 2 months of being back to my 99% sunny self.

I may be in a funk, but I'm not so far gone that I don't remember the days just 9 months ago when I prayed to be where I am today.

The Queen of Hair Products

First of all, I want to say that it is truly and completely unbelievable to me that today, the biggest update I feel compelled to share is on the current status of my HAIR. I feel blessed beyond belief and afraid to say more for fear of somehow jinxing things. But I guess to be fair, I do feel like hair can often be a direct reflection of your health status and so far, mine continues to look great. It's actually kind of empowering to regularly know that my vital organs are all operating as they should, my thyroid is in good shape, and so on. And by empowering I also mean anxiety-inducing and fairly crippling each time I brace myself for something to be "off," immediately followed by the relief that if not for this little cancer diagnosis, I'd probably be considered in pretty good health!

It's been so long since I've last updated but I've been wanting to share these photos for quite some time now. Yesterday I finally got my haircut and I've noticed a couple of things:

1. My hair appears to be re-growing at a very fast speed (yay!) and coming in the same color and texture as it was before, which is to say it's re-growing with a slight wave to it and it is VERY thick. This is a great thing! The friend who cut my hair said she even thinks there is hair coming THROUGH my scar (which she also noted is "beautiful" and "very small" and I'll take her word for it because I can't see it!)

My dad would most certainly make some kind of crack about how this just proves how hard-headed I am. And he wouldn't be wrong. :)

2. The one downside to #2 is that very thick hair that is only a few inches long but lays underneath other hair is kind of troublesome - it has a tendency to stick up and out, possibly in part because I've also had to re-train my part (I hear side parts are coming back, thank goodness!) to go the other way. 

I've been through more hair products than I can begin to describe -- including some "filler" products, various dry shampoos, and hair thickening sprays. I've become a big fan of the Bb thickening spray along with the WOW root lifter. I literally can't travel without them. (On that note, I'm a bit nervous about how the hair routine will work in a foreign country without access to my usual heat tools but that's a bridge to cross this weekend.)

I know few people really notice it at all and most people probably have no idea that sometimes it can take me a ridiculous amount of time just to get my hair to look like I really didn't do anything to it. And honestly, most of the time I just don't care. Either you know me well enough to know that I lost a huge chunk of my hair due to radiation or you don't, in which case you shouldn't even care, right? And people I encounter are always so complimentary of my hair which is a little weird because that's not something I have any real control over but also a big confidence boost because it feels good to hear the subtext behind "your hair looks great." 

A few people have asked me if I'm doing anything special and I often joke that I am taking enough biotin every day to kill a small animal (without any actual knowledge of whether or not a biotin overdose would, in fact, harm an animal so please don't come at me!) Truthfully, I take biotin and I've been using a shampoo and conditioner bar that has biotin and rosemary in them and occasionally a hair oil with those same two ingredients. And I honestly have NO IDEA if any of that is helping but I KNOW it's helping me *feel* as if I'm doing *something* to take back control of something that was out of my control so that's not nothing, you know? For what it's worth, my nails are also in amazing shape -- I haven't broken a nail since before brain surgery (BBS.)

Right now, the hair "underneath" is probably in its most awkward grow out phase yet but I'm hopeful that in a few more weeks that will start to change and I'll notice the left side filling out to be more like the right side. Cutting this hair was like piecing together a puzzle because I have hair that was growing back after being shaved for surgery, then hair that was growing back because it all fell out due to radiation, then hair that is just randomly growing new (kind of like the hairs that sprung up after I had babies) and hair that has been damaged and made brittle for no real known reason. It's been a long time since my hair was quite this short but I think it's going to be like this for a while and I kind of love it. Every other time in my life that I've cut my hair chin length, I've immediately decided I liked it but would grow it back out again. This time, I think this cut is here to stay for a while. I guess time will tell. Here is a rough timeline, dating back to late February when I had finally stopped losing hair to today.

Sunshine, Summer, and the end of the Semester

Just before they turned on the IV to knock me out for "2 for 1" endoscopy/colonoscopy special earlier this week, the doctor doing my procedure (which was delayed so we had a little extra time to chat about my recent medical history) looked at me and said, "You're remarkably cheerful for someone who has been through all of this in the past six months."

It's one of the last things I remember before the liquid warmth enveloped me and I remember thinking how nice it was to hear, but also how very unexpected. I never would have dreamed six months ago that I would be "that" kind of person in the face of everything I've been through. But really, what other choice is there?

As I left the building in a wheelchair to meet Edgar at the car, a man passed me at the entrance and something about his plaid shirt and jeans with belt kind of caught me off guard. He made eye contact with me and smiled and I remember thinking he looked vaguely like what my dad might look like today if he had lived. I immediately teared up. Edgar didn't even see him, so I'm not convinced anyone else did and I feel 99% certain that my seeing him was a moment I was meant to notice. It was a nice bookend to a procedure I had been dreading for weeks and another reminder not to sweat the small stuff. And oh yeah, ultimately it's all small stuff, even yet another medical procedure/screening.

Luckily, it appears I sailed through the procedure with flying colors (recommendation is not to return for 10 years!) and the doctor seemed to think that the cause of my low iron stores (I'm not anemic but the stores are really low - like "how are you functioning every day?" low) is probably just the fun fact that I'm still showing pretty much zero signs of menopause. (Which brings up a whole other topic of how little we understand or know about women's health in general but that's a post for another time.) He suggested I push for an iron infusion and move on with my life so that's the hope for June, if not sooner. I don't get bloodwork done again until June so I need to figure out how to push that up or push for the infusion without it.

In other life news, I have lots of summer plans (yay!) including a "why not?" upcoming one day trip to Disneyland with my favorite second son over Memorial Day weekend as part of the ruse to "help" bring him home for the summer. Edgar and I are planning to FINALLY take our twice postponed trip to Europe to celebrate our 25th wedding anniversary (and we'll get it in before we get to 26!) and of course I'll be traveling to Iowa for the national speech tournament in June. Somewhere in there I also have a long list of home projects to tackle and intentions of starting a book, though that is admittedly the last thing on the list right now. I also have decisions to make about returning to U of I and my doctoral program in the fall.

However, part of writing a book may just be trying to go back and see if all the things I've written/blogged about over the years have some kind of connected theme or significance, and among those is what I'm going to include here to wrap up this update. I started teaching in the spring of 2016 and realized near the end of the semester that I should be a teacher who walks the walk, meaning I needed to give a last day speech. I've continued this *almost* every semester (I think I've missed two?) and some years I work on it ahead of time and other years I throw together a few thoughts in the five minutes before class begins. I always tell students is a classic case of "do as I say, not as I do."

But this semester, it felt too important not to proceed with more preparation. So the night before our last day I wrote this, and then practiced it about 5 times. I delivered it to three classes and it was never exactly like what is written here but then, that's exactly what we try to teach in terms of effective communication. In any case, this is mostly what I had to say and it occurred to me it could be a nice blog post to document where I am now, just six months from diagnosis and surgery.

Last semester started just like this semester did.

But last semester did not end just like this semester.

So to begin, I want to tell you how truly lucky I feel to be here today. It is no small thing but this is not an accomplishment that I have reached on my own. Most of the credit goes to all of you - who energize me, who inspire me, and who make me come to this classroom every single day without ever feeling like I’m going to “work.” I have three takeaways I hope you will remember from this speech: 1. You can do hard things, 2. You can manifest your dreams through sheer determination and willpower and 3. You never know when you are inspiring someone else.

Last semester I came back on the Friday before my brain surgery to meet with my students and to meet with my course chair. I was filled with anxiety and I still couldn’t finish sentences and when I tried to talk to students, I was overcome with unexpected emotions. We knew I wouldn’t be able to finish the semester, but with a boldness and a certainty I absolutely did NOT feel, I confidently told Dakota (Horn) I would be back in the spring. At night, at home, in the quieter moments, I wondered to myself if returning to teaching really was going to be a possibility for me or if my brain had already been too altered by all that had happened. Sometimes I wondered, even if I *could* return, *should* I?

I had brain surgery - or a left frontal craniotomy - on Monday, November 18 which included the removal of two tumors, one the size of a walnut. I was discharged on Wednesday at noon. By Friday, I was riding in the car (not driving) to get lunch and Starbucks and then I still had enough energy to help pick up my daughter from school so we did that too. I wanted to do that for her, it was important. About two weeks later I surprised my speech team by showing up to a tournament and then went to Champaign to see my other other daughter perform in “White Christmas.” None of these things were easy. Just because I made things look easy - like fixing my hair a certain way to hide my very long, shaved incision - that never meant it was. The old adage that you never know how strong you are until you have no other choice- is completely true. We can do hard things but remember, there is no “hard things” Olympics. There is no need to compare. Your hard is not my hard but it’s ok, there is no competition. There is only the need to persevere, whatever your hard thing is.

Secondly, you can manifest your dreams through sheer determination and willpower. I believe this with all my heart. When I was admitted to the hospital after they found the tumors and they were trying to find the source of them, I spent hours scrolling Facebook and right away, I started to screenshot things that would pop up that I wanted to keep. 

The funny thing is, I kept screenshotting them but I almost never went back and looked at them and pretty soon, my phone was filled with these inspirational messages (because algorithms are real and once you start to engage with these kinds of messages, you get more of them and it just feeds upon itself.) Sometimes I would screenshot multiple versions of the exact same message — one of those was “You are about to get good news after good news after good news.” And guess what? That’s exactly what has happened. I absolutely believe that what you surround yourself with will manifest itself into your life, so choose carefully. Choose deliberatively. Choose positively.

And finally, you never know when you might be inspiring someone else. Frankly, I’m a little tired of being told how inspirational I am. Because the truth is, I’m just doing the things I think I need to do to stay alive for my husband and my children and for my friends and yes, even for all of you. But it’s not because I think I’m special or that I have something extra special to share with the world — it’s because I recognize that we are ALL special and we ALL have something extra special to share with the world 

and part of my job - both literally and figuratively — is to do everything within my power to ensure all of you learn how to use your voice — again, both literally and figuratively — to make your mark on this world and to be sure that even when you don’t feel inspiring or special or worthy, when the time comes you are in the right place at the right time to inspire someone else. You probably won’t even know when it’s happening and you may never know it happened so that makes it even more crucial that you are ready when that time comes. 

So those are my three messages for you today. You can do hard things, you can manifest your dreams through sheer determination and willpower, and you never know when your words or actions could be inspiring someone else. So be ready. Be ready for all of it.

I’ve been through a lot in the past year. But I know you have too. We all have our own struggles and hopefully, they help to make the successes that much sweeter. Today, I have successfully gotten to the end of a semester I wasn’t even sure I’d get to begin and you have been a part of that journey. You are now a part of my story (whether you like it or not) and I sincerely hope that when you look back on COM 103 you remember it was more than the anxiety of giving speeches or writing outlines or doing research but that it was a time where you found a reason to do things a little differently, to see things a little differently, and most of all to give some grace because at the end of the day, we’re all — students and teachers alike — just trying to get through, one semester at a time.

Ob-La-Di, Ob-La-Da

My promise to blog more often is obviously not going all that well.

But I have a bit of a confession to make: sometimes I'm just not sure what to blog *about.* 

Before cancer, I was a sporadic blogger at best anyway, usually only posting when some lightning bolt of inspiration hit me. Cancer was obviously a big lightning bolt and once the dust settled, it became both therapy and communication tool for me. I convinced myself that *this* would be how I could control the messaging and the narrative about what was going on with me. For the most part, it works great. 

But I overlooked something important that started to bother me about a month ago. Blogging is not "real-time." Either is social media, if we're being honest. (Algorithms are not our friends!) And so here's what happens: I post a FB update or a new blog post when I'm having a bit of a down day or just have a particular challenge to overcome. Just the act of posting that alone is therapeutic and almost immediately, I start to feel better. Generally by a few hours later, I'm back to being in a good place. I'll post what is essentially a snapshot of a moment in my timeline, but I'm not living in that space - does that make sense? But of course, people often don't read those updates or even blog posts until later -- and sometimes that is DAYS or even WEEKS later and that's when they leave comments. And while it's completely irrational (ok, borderline crazy sometimes) I'll find myself feeing a little annoyed when they take the time to comment because I'm not in that place anymore. And then I remind myself that I'm being crazy. And then the whole darned cycle repeats itself again.

I talked this over with my therapist a few weeks ago and we decided that it's probably time that I return to blogging about things that aren't cancer-related. But the problem is, it's still such a looming presence in my life. Most of my in-person conversations still revolve around how my hair is doing, how I'm feeling, etc... And I have enough self-awareness to understand how tiresome that can be, but not talking about it feels like denial so sometimes it's like there's no win, you know? 

More often than not, I find that people are surprised to see me functioning at all, much less understanding that I am working full-time again, traveling, and generally back to living my life as normal. Every three weeks I pause for a few hours to get some IV meds that will hopefully extend my life and then I leave there and go on with my day. Physically, there is nothing about me that hurts or feels sick. In fact, I'd argue that I'm feeling much better these days with a few meds on board that I've probably needed for a while. And getting those tumors out of my brain was a big step too. :) I remember how the morning after his open heart surgery, my dad said he couldn't believe how good he was feeling because he hadn't realized how bad he'd been feeling before. I feel that in a lot of ways. 

So, that's the current update that isn't really an update at all but if I've learned anything recently, its that sometimes being boring is just fine. I do have a bit of an update on my wig situation that I will post later this weekend because it deserves its own post.

I just looked at the calendar and realized that Tuesday was the 4-month anniversary of my surgery. It's the first time I hadn't thought about it ahead of time or at least the day of. I flew home from FL that day and in retrospect, I can't think of a better way to mark that occasion. 

"Ob-la-di, ob-la-da, life goes on, brah La-la, how their life goes on."

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.