Long time, no update

 Ummm so yep. It's been a while since an update. I still have that draft of The Cancer Fright Part 3. That is not this.

I just listened to the latest This American Life, Ghost In the Machine (https://www.thisamericanlife.org/757/the-ghost-in-the-machine).

The first Act was about training an AI to write a story about the loss of a sister....

...but.... it was more about "can an AI learn to write about loss". Loss....

It got me thinking about my loss. Yes it was years ago, but it's still always forefront in my mind. You want to think I didn't lose anything, but a ball. But I loss my autonomy, my body wanted to kill me, and I can never forget that. I loss a part of me, and the other part could possibly betray me at any time. I lost some of me, the chemo can possibly cause more cancer down the line, and we can't know until it hits.

But further... it got me thinking about my loss. All the time, you hear about cancer survivors going out into activism, bringing notice and exposure. Becoming a huge person to bring notice and cancer funding. ...

And what have I done?!

....

I'm not going to go start a non-profit, I'm not going to start huge fund raisers. I'm not one to make a splash.

.....

and now we get dark.... I'm not even one of those that made huge changes to their life. I'm the same as before. I feel like I should have been "OMG I survived, I need to do something!", but I'm not. I survived, and I just went back to life as usual. A part of me feels guilty for not feeling "so incredibly thankful" to have survived, like all the Instagram and Twitter posts make you think you should feel. I'm not taking my survival to the masses to promote screening or testing, I'm not in the spotlight. I don't want to be.

I guess, my only thing after surviving, is just being here for my family. The News won't ever hear of me, I'm not raising hundreds of thousands of dollars for research. I'll donate what I can for research funding, and ask others on a tiny FB donation campaign.

But if you read this, and if you have any type of cancer..... I guess just know this. You don't have to survive and become some huge advocate. Just survive, and love those that love you.

I love you for having survived.

And I love those that haven't.

The Real Cancer Fright (Part II, The Fear)

After the doctors fights, after you're all done with what others can see, when you just want life to go back to normal, it doesn't.

(Aside, I don't mean to minimize the fears and worries of any friends, family, or caretakers of Cancer patients in this post. I simply want to highlight the difference between what they see, and what we feel.)

Through all the surgeries and chemo, the side effects and the time out of work, you really just want to get back to normal. I just wanted to go back to work, live my life, and move on. I tried. I did go back to work after the orchi, and then later after the chemo.

So does everyone else. They all want life to carry on. But there is a difference between you and them. For them, it can. Life feels normal again, everyone is doing what they did before. You're doing the normal, because you think it can make normal again. They are doing it because they see you doing it, and they think normal is back. It isn't.

For you, it never will be. Certainly life will move on, the days will come and go, and there is always the regular life stuff to take care of. But for them, it's back to business as usual. For you, however, it can't.

I say "can't", and "won't" because it's true. Sure someday, once you've recovered from the treatments and gotten through the doctors fights, life moves on. But it's not the same life. For them, once you're out of treatment, what else can they do?

(I'm just now finding out, months out of chemo, these side effects show up later, and will probably be permanent. There is no going back to the old normal.)

So they move on, try to make life their old normal again.

And sure, you try to. But you can't. There is something in your head that is blocking the old normal. In the last post (Part I) I talked about how that something is projected onto others. Here I want to talk, in brief, about what those emotions do on the inside, about what those fears really are.

The fear, sitting inside you since the diagnosis, stays there. Even after surgeries and chemo, clean scans and "so far so good" meetings with the doctor, the fear doesn't go away. Inside, that fear brings energy. It brings with it an atypical "Fight or... What?"

The old normal resulted in Cancer. How could I possibly go back to that? I know how that story ends! No thank you! The old normal I was fearless and invincible. Then I found out I wasn't. I really don't want to go back to that false sense of security, only to be crushed again.

I could work on the old normal, to make it better. I could look for something then, that could make me and mine happier. I didn't find it then, then ended up with so much hurt and fear. That old normal hope died.

The biggest thing is the fear. The old normal wasn't afraid. The new normal, after first finding it, and then finding it again, knows fear. My body, my teeny tiny little cells decided to go rogue, and try to kill me. If just a handful of little rebels can try to take me down, whats to say it can't happen again, and again? While we're on the subject, the chemo and multitude of scans can actually cause more Cancer.

The old hopeful normal is gone. It's replaced with a fearful normal.

And it's a change in your head that noone can see, noone can know. (to be Part III)

The Real Cancer Fright, (Part 1, The Anger)

These posts were supposed to be The Real Cancer Fight, and an auto correct typo made it the Fright, and I think that title works. I'll stick with it.

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My last post was about what people expect to see when they hear someone is fighting cancer. Loved ones, friends, family, colleagues. They expect the time at home from surgery, the fatigue from chemo, the hair loss and changes in looks. Then all that is done, the next scan "looks clear" (we know that means nothing at this point, and that is another post). So what are they left to do?

From their viewpoint it's all done, You've Beat It! (pun intended) You WON! You come back to work, mainly because you need the money, and they all welcome you back. "Good job!" "Great Fight, You Won This!" And all that praise feels good.

For a few days.

I'll start here from the surgery (orchiectomy). We all had hoped that was it, it wouldn't come back, they got it all. A few weeks and I'm back at work. The scar still hurts. Even though it's only been a few weeks, word has gotten around. Eveyone I see tells me "Good Job!", "Great to have you back!", "You beat this!". But I notice other things. The looks they give me. The sideways glances that tell me they don't know what to say. They wonder if they should mention it, or just ignore it and act like it's business as usual. They aren't sure how to act around me now.

Every step reminds me of what is gone. The scar heals, the pain is gone, but the reminder is there, with every step. They don't know if they should acknowledge my Cancer. It's as fresh for me as it is them. I don't want to acknowledge it. So I don't bring it up either. Every interaction is painfully awkward. It's that thing that everyone is thinking about, yet no one eve mentions.

And here is the start of the Real Cancer Fright (now, I am loving this typo). I'm feeling all these changes, even before it gets deep into my head. I'm still trying to understand why my body tried to kill me, and no one wants to talk about it. They all know, but want to move on like nothing happened. I can't move on, because it did fucking happen. Every interaction shows me this disparity, an impasse neither of us can cross yet.

Then things changed. I started thinking "I beat this!" (coming up in Part II, why that might be a bad thing to think). I was walking tall, thinking I was done with Cancer. And two things evolved out of that thinking.

First, I felt like a fraud. At the time, I hadn't needed chemo or the RPLND. I was in a Facebook group for TC, and I read so much about what others were going through. I hadn't gone through that (yet). So who am I to say I beat Cancer? I had a surgery. That wasn't work. I didn't fight through this.

Second, everyone else told me I beat Cancer. See previous paragraph. They don't know how hard it could have been, or how little I had done at that point. Even if they knew someone who had done that hard fight, they knew I didn't do that (yet). Who are they to praise me on something I hadn't done?

For some reason, it really pissed me of that I didn't get to go through that "real" Cancer fight. Not that I wanted to, mind you. But in some strange way, even though I had the fears and mental anguish Cancer can bring, I missed having the real fight. Sure I had the orchi surgery, and I'm forever altered. But I can learn to live with that, even forget it. (And I did. Withing a few months, I forgot one of the boys was missing.) So where is the constant reminder that I "beat" Cancer? Where is the reminder I can use to be an advocate for cancer research? Other than the few weeks missed work, how had it changed me, at that point? I had/have Cancer, and I was angry that it didn't change me like I thought it would.

And then... it did.

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I know this post is subtitled "Anger", but there were so many emotions at this point. I tried to bring in the Anger in his post, but really, this whole journey has been filled with so many different emotions, there isn't really a way yet to post only based on emotions.

I'll probably leave off the emotions tags on future posts. I just need to tell my story right now. Perhaps later, I can provide an emotions based directors cut of these posts.

The Hollywood Cancer fight

Preamble: This started as a post on the Testicular Cancer Commons on facebook. Here I expand on the general ideas in that post.

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Original Post

The way cancer is shown in the media, and the way everyone sees it, everyone thinks the fight is the doctors, the surgeries, the chemo. But that is others fighting the cancer. That is the easy part that they can see and say "yeah, fight this". The real fight is later, in the survivors head, in our heads. Its quiet, unseen, and ignored mostly. And it's harder than going through any surgery or chemo. They can't see it, and so they don't cheer us on. Trying to deal with the betrayal of our own bodies isn't easy.

I might expand on this later, just needed to get it out. It's been in my head for a while. Going through a rough patch right now. I got used to how it felt after the orchi, but now the neuropathy from chemo is setting in. Every step reminds me of what happened.

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Yes some of this will be verbatim, I just need to get some of these thoughts out. So sue me.

Cancer (yes this will be capitalized throughout. For the purposes of this discussion, it is a proper noun.)

Unless (and sometimes even if) you know someone going through it, a loved one, close friend, colleague, then you have a certain view of it, that is continually shown in the media. The media (TV, movies, most produced money making content) has a tendency to show Cancer in one particular way.

• There's the scare, "That's probably not good, maybe I should get it checked out.".
• The diagnosis, "Our tests show elevated tumor markers, and the ultrasound shows it's Cancer."
• The operation, "So I've scheduled you for a surgery next week. Hopefully we caught it early enough that the surgery will get it all."
• The follow up, "The tumor had some minor lymph involvement."
• Scans galore, "We found an enlarged lymph node, and the PET scan shows it's active."
• Chemo, "There will be some side effects, mostly we'll be concerned about a compromised immune system."
• The finale, "The last PET scan shows no activity, but we need to keep up with the scans for the next few years."

(These are all events in my own treatment, maybe I should get a movie deal.)

And then between all of these, Hollywood will insert some comedic sidekicks to make jokes, maybe a wife/girlfriend to hold a hand, someone shaves their head in solidarity. Then the story finishes up, they found love, or stood up for themselves, now they are in remission, and we all applaud. Gotta make the moneys, I guess.

That is the Cancer fight everyone knows, and expects to see.

That is NOT the Cancer fight that the Cancer patients go through. That is NOT the fight that no one sees.

(After this, I talk about my own experience, but it can probably be applied to anyone going through Cancer.)

I'm getting tired of hearing people tell me to "fight the Cancer". The fight they expect to see is not my fight. They want to see the doctors and nurses do things to me. The fight they expect is the doctors and nurses fighting. That is not my fight. My fight is silent.

My fight, from the beginning, is holding myself together, so I can hold my wife and two little girls together. I had wanted my wife there when I found out if it was Cancer. Turns out, the tests, (and all timelines when dealing with Cancer, apparently), are accelerated. I heard those words alone. Then I had to come home and tell my wife. Holding myself together, while she cries about it. That is my fight.

Sending an 11 word email. "I was just diagnosed with cancer. I'm not coming in today." That is a small victory in my fight (I was not happy with work at the time, so sending a "FU, I'm not coming in today" email, even under these circumstances, made me happy).

Surgery. Never fun in any circumstance. But in this case, I lost one of the boys. Once I could get up and around again, just walking felt weird. Every step reminded me of what I lost. But I also lost the Cancer that was in it, so yay me? Until I remembered what it tried to do to me. This is my fight.

Trying to stay present, and active with my kids, knowing I have this monster in me, just waiting to rear it's head in a lymph node and come back. Living in fear it might come back, and just trying desperately to let them know how much I love them, without putting my fears on them. That is my fight.

Being told there is activity in a lymph node. And I get the choice of chemo or radiation. I can talk to a radiation specialist... in 3 weeks. I got the surgery in 5 days, why do I have to wait for weeks to talk to this person? What kind of choice is this?! "Cancer is killing you, how would you like us to kill you first?" Being consumed by that choice for weeks. Basically choosing how to die. (I've described chemo as drugs that kill everything, and they just hope the Cancer dies first. And then radiation is, well, a killer in it's own way, regardless of dosage or usage. The only variable is time there.) That is my fight. 

So I chose chemo. So far so good, 4 rounds of this cocktail, nausea isn't that bad, I'm really just tired most of the time. Not as bad as I thought it would be. But I'm out of work for the duration. Bills still need to be paid. My kids are still there and looking to me. It's not easy trying to explain the medicine that will make me better is going to hurt me first. They don't quite get it. I know the science, and I don't quite get it. I'm not working, so what do I do. I feel useless now. Who am I, if not what I do? Regardless of work or housework or parenting, most of which I can't do anymore, who am I now? This is my fight.

These are still during the Hollywood Cancer fight. These are my small battles to get though while everyone else sees the doctors and nurses fight. They aren't seeing my small fight in there. To everyone else looking in, they see this as the big fight. Get through this and we're done, I lived, they are all so happy.

Now the real fight begins. My real fight, a fight that no one can see, is rarely ever shown in media. A fight that is harder than anything anyone can understand, unless you've been there. The next post I'll put down some thoughts on that the real Cancer fight is about.

Schedulers....

So when a scheduling nurse tells you they'll call you when you next need a scan.... don't believe them. I was supposed to get a call in late July, early August. Nope. No call.

So now here it is, November. I called to check on when the doc wanted a scan. Then I had to call again two weeks later. Yes. I had to schedule my own scan.

God damn doc! This is supposed to be your job! No, not "supposed to be", this is your job.

So now we go to see this doc to review my scans. I might request a new doctor. Maybe one that knows what they're doing, and isn't so condescending. I might be dying dude, please show some sympathy.

Angry at the doc. Scared at my body.

Fuck cancer. And just... fuck.

The stars

I looked at the stars tonight. I wasn't looking to recognize a constellation. I wasn't looking for a planet or stellar cluster. I just looked at the stars.

I'm still scared. I'm still on the edge of tears some days. Some days I feel like I never deserved this. Other days I feel like I don't deserve to have it this easy, no chemo, no RPLND (yet, knock on wood).

Mine hasn't been as hard as others I've read about. I haven't had the life changing "week in the hospital", "weeks on chemo", "staring in the mirror as the hair falls out asking Why?!" moments.

But tonight... I just looked at the stars.

This is a random, not related to cancer, meta post. My last few posts, somehow the system ignored my paragraph breaks. I thought it might be because I wrote them on an iPad, and there might be a Unix vs windows line break issue. But I redid the line breaks editing on android, and no fix. (Paragraph break here as android test) I'll figure out how to fix the wall of text soon. EDIT: even posting on android doesn't preserve the line breaks. Bug report pending...