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...

It doesn't go away...

This started as a Facebook post, and I felt I needed to keep writing, so here's the rest... "So I had blood drawn and CT scans last week. Met with the doc today, and he said the tests looked good, the scans were clear. This is 4 months post orchiectomy, so... so far things are looking good, physically. Mentally, all the fears and scares from 4 months ago are coming back. The physical stuff I think we can all push through. It's the mental stuff we need help with. Since this cancer typically hits at such a young age, it really makes us question our mortality. And that isn't easy to do, at any age, much less our demographic."

The ages that TC hits, statistically, 20-34 years old. It's the age most men are trying to make their career. Probably fresh out of college, trying to make something with their degree. Possibly into their first job out of college, looking at the rungs of the corporate ladder they want to climb. Or not. Maybe they are stuck working at Burger King or Walmart, wondering if and how they might be able to get a real career. Or hell, maybe they really just want to flip burgers or stock shelves for now. We all have our own goals.

And none of them include getting cancer. As young men, none of us really think about how we might die. We're young, we're invincible, we can drink and smoke and party all we want right? Then comes the cancer.

We don't deserve this. We didn't do anything that might cause this. The very things we were counting on, out on a good night at the bar, betrayed us and tried to kill us! We didn't ask for this, but it happened. And we got through that. We lived! Woohoo!

But we have cancer. It's not gone yet, or so the doctors say. They want more scans, more tests, and every time, the feeling comes back.

I was young, I shouldn't have cancer. This shoudln't happen to me. I was young. I shouldn't have cancer.

We're not young anymore.

Getting this diagnosis is not easy, nor is the treatment afterwards. And I still stand in awe of those guys going through the chemo and RPLND. You all have my respect. That is not easy, physically. But I want to bring us all together mentally.

From stories I've read, this fear never goes awlay. No-ballers, Uni-ballers, and those that stand by their men through all this, let's stand up and help those with that fear. I'm not out of that fear. And one day, I hope I can be one to help others through what I'm in right now.

I'm not really over this yet

I've seen it called "scan anxiety", and that pretty much explains what I'm feeling right now. It's been 3 months since meeting with the oncologist, nearly 4 months since the surgery. The post surgery blood tests and scans, I was told,looked good. Nothing they could see on the scans, blood markers were coming down as expected. The oncologist said the surgery probably got it all. So overall, good news... At the time... And now I have more blood tests, more scans, and another meeting with the oncologist. And I wonder. Not necessarily worry, but I wonder, what if it is still in there, what if this isn't over. Intellectually, I know this won't be over for years, there will still be scans and tests to be sure it's gone. But I wonder, how will we ever know? I've read stories of some people that have had it come back 20 or 30 years later. Was it related, or was it just the other ball that went rogue, independent of the first time? Can we ever know the difference? I think the biggest thing, I'm scared. If it does come back, I know I'll either need a RPLND (major stem-to-stern surgery) or chemo, or both. And both of those really scare me. Granted the Facebook group I'm in, the other forum posts I've seen, most people only post when they have problems, and those problems are all I've seen about this. Odds are, so many other guys go through this with no problem, yet never post about it. I guess that is part of the point of this blog. I try to post when I'm feeling better about this, coming to terms with it, hoping to provide a place where guys can read about how it's not so scary, and we can get through it. But at the same time, it's fucking scary, and I hope to let other guys know, it's okay to be scared. That's why I'm writing my fears on here. It's okay to be scared. I'm going to repeat that. It's okay to be scared. That's an entirely new idea for me. Whether I was 16 and afraid of asking a girl out, 24 and afraid losing my job when applying for a new one, 33 and hating my job and afraid of applying for jobs with requirements that I don't have experience, 34 and getting cancer. In each of those situations, I was afraid, but I forged through anyway. And things happened. I lost the girl, turns out she was never loyal and cheated on those she cheated with. The job fell through, and, in a long weird chain of events, I found my wife. I applied for those jobs I didn't quite have the experience for, and I got it. Now it's turning out this new job is probably the best one I've ever had. And I'll fight though this cancer fear. I might need chemo, and be sick and tired for weeks at a time. I might need the RPLND, which will probably be 6-8 weeks recovery, if not more. Or I might need nothing, once we see the scans and blood work. But seeing my old fears, I see that life moves on, often in better ways. So I'll move on. The say "Hope for the best, plan for the worst". So I'll hope the tests show all clear, and I'll get some good books to read, queue up some interesting series to watch, if I have to be out of work, and have to really start this fight. But I still hope I don't have to fight, physically, anymore. The mental fight will go on for at least a few years.

Not sure what this is

Post edit: I wrote this post about 2 weeks ago. Then we went to hang out with a friend, I got drunk and don't remember things. From what I've been told, we're playing Cards Against Humanity, I had a card along the lines of "my life wouldn't be the same without __" some of the answers came up as genitalia or the equivalent. I'm told, at that, I broke down and had some kind of emotional breakdown. I guess this post makes sense then. I wrote the following 2 weeks before that drunken breakdown.

...

I hate my job. There have been times its made me want to cry. The key words here being "want to". In life there is always stress, it's something we all have to deal with.

Yet since my diagnosis and subsequent surgery, things have changed. I no longer felt like wanting to cry, to relieve stress about life and job. I felt like I needed to cry. It was no longer about the mountain of stress on my back. It was that I couldn't hold that mountain up anymore, knowing what I now knew.

That mountain of work stress didn't crush me. It fell sideways. But I was still left with the stress of dealing with my diagnosis.

Stress is an interesting word. In computing, it can mean making the circuits do as much as they can. In engineering, it can mean pushing a design to the limits where it might, and will probably, break. In both, and other disciplines, stress defines where things break. So then, how do we define where a survivor breaks?

By popular definition a survivor doesn't break. But anyone in this knows we break the moment the doctor says the word "cancer". Our psyche breaks at that moment. At that moment, we are no longer normal. We have to check that damn box. At that moment, we aren't human, but rather a subset where we get fake sympathy, or overly accute relationships.

My seminona was found and surgically removed. As far as we know, it hadn't spread. So for all we know, I'm a survivor. But I still feel the stress.

If stress defines when a physical object will break, how does the emotional analogue work?

I hate my job, and have been looking for over a year. Now I got a new one, a position that will provide a mentoring and teaching stance. I love it, it's awesome.

But I still have the stress. So clearly this stress wasn't job related (that's not to say there wasn't job related stress, that was a different kind).

When I got the new job offer, I nearly cried. I'm finally free of a depressive, vindictive, and uncaring work environment. My new position is inclusive, encouraging, and uplifting.

...

Yet I'm still near tears every day. The new job clearly isn't the solution. The problem is me. The problem is that I'm still dealing with fact that my fun bits tried to kill me. Perhaps that's the reason. I'll have to explore this further. But is this feeling a result from the cancer that was in my man bits? Would I feel differently if it was elsewhere?

Granted many other cancers have much worse survival percentages. Yet there are still survival stories. Am I maybe feeling a form of survivors guilt? Is that why I want to cry? Am I crying for those who lost the fight, or because against all odds I won? Or both? Or neither?

What do I even feel about anything, on any side of this? I don't even know yet.

My own body tried to kill me. My mind got me a new, satisfying job and workplace. Where is the disconnect in these? Is there one? Which one takes presidence? Can one take presidence?

Good gods this is a lot to process.

You all think you're done...

... yet I'm not. You all hear I'm on surveillance, and you all think that is the end. I have two (or more) points. Surveillance is not the end of this. It's just checking to make sure my demon doesn't come back. I've read stories about seminomas, that after 12 years it came back, and he lost that last fight. From what they can see, I'm clear. But what if? What if it's still there, waiting? What if, years from now, the universe decided I'm done? Every step I take it feel lopsided, every step I remember what happened. Every step I remember my own body tried to kill me. Every step, every pain, every weird feeling, I wonder if it's back. Did you go read the post I linked last time? Granted that blogger was in a much worse situation than I am. Yet he made it to 5 years, cancer free. But it's not the cancer free that survivors are looking for. If you read the post, it was two years after the chemo and surgeries when it really hit him. I don't want to wait two years to realize how this has changed my outlook on life. But at the same time, I don't want to realize NOW how this has changed my life. I want to believe the surgery got it all, and we're done. I want to believe that I'm done. But I can't. Everyone else wants to believe that, because they can. It's not in their bodies, it's not forever stuck in their brains how close to the end it could have been. They can try to feel how close to the end it was, but it's not the same. They could have, and still might eventually, lose someone they love. A single person. I might still lose it all, everyone I love, pardon my French, I might still lose you all. I am one, y'all are a lot. I'm not trying to say I'm dying. I'm just trying to process the fact that this might still kill me one day, and that it could have killed me in the past month. But in trying to process that, it makes me wonder. There is, be definition a disconnect. You all could have lost me, a single man. Yet at the same time, I could have lost all of you. Let's let that sink in for a minute. You all have one man to lose. I have a loving wife, some beautiful daughters, a brother and parents, extended family and inlaws, nieces and nephews, all that love to lose. Think about all that. I want to say, you have my single love to lose. I have all of your love to lose. Before you decide you're happy that I'm in surveillance now, please understand how much more I stood to lose, and how afraid I am that this isn't over. This isn't over for at least the next two years, yes YEARS! And every day I'll be afraid that my own body, the only one I've got, is going to try to kill me again. Before you're happy for me, please try to understand this. I'm not happy, yet. I'm still fucking scared. And will be for a while.

,,, but now what

http://www.stevepake.com/cancer-blog/2015/11/5/pstd-after-cancer-part-1-what-it-feels-like

First, go read that post, I'll wait.
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Okay, so did you read that post? Or did you think I didn't mean what I said. Go read that post, and don't come back here until you've read it.
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Seriously, go read that post. This is important.

http://www.stevepake.com/cancer-blog/2015/11/5/pstd-after-cancer-part-1-what-it-feels-like

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I'll post my reaction to that post tomorrow.

And if there are any comments, I'll reply.

Just read that post.

We hope it's gone...

...for now. From the last post, the wife was there for the news, her family (which has been very supportive through all this) knows, my family knows, the few people at work know, and they are all happy that it's probably gone.

I should be happy, right? I'm not. Yet. The past few weeks have been weird. I don't know how I feel about all this yet. It's all happened so fast. I think I'm still processing all this. And there at least two things I can point to that make this weird for me, and more difficult to process than everyone else.

Everyone else thinks that now that we are on monitoring, odds are it's gone and we're done. Yay, let's celebrate! And yes, those are the odds.

But I've read stories about people who were told a seminona was winning the lottery of cancer. Then 12 years later it comes back, and they have a hard fight to get through it. It's these stories that still scare me, even after what is supposed to be good news.

We might be done. So yay. But we might not.

And there is my second point. Everyone else only hears the doctors words. Yes we're hopefully done, and I'm clear. But I'm the one that has to check that box at every doctors visit. I'm the one that feels something is missing. With every time I get in or out of a chair, I feel what I'm missing, and I think about it. Every step, and I feel lopsided, and I think about it.

Everyone else hears we're probably done with this, and they are happy and done dealing with it. Yet I feel the results with every movement, and I know it could come back. Every step reminds me of that, and everyone else is relieved. I'm still scared with every step I take, every little swing my one little guy has left. It weighs on me much more than anyone else who is there to support me.

You all are there to support me. This might be the end. And I thank you all for the support, but I'll live with this fear with every step I take.

Updates, good news

So I saw the oncologist today. Fist, let me say, this post will have two parts.

1: Seeing an oncologist...
Before this, it was urgent care, the ER, the urologist, surgery. It wasn't anything that really said Cancer. Yes there were tests, the diagnosis, the report on directing my ball. But it wasn't really Cancer until the oncologist, the Real Cancer doctor. Making that appointment, the waiting for that appointment, there was a lot of thinking. This really is Cancer. My own biology betrayed me, and it really is Cancer now. I'm going to have to check the Cancer box every time I see the doctor now.

It's a weird realization, and a new way of thinking.

2: good news going forward...
The oncologist took at look at all the blood work, the scans, and the report on the surgery. He recommended monitoring, scans and blood work every three months for the next year. From what he saw, there was no need for chemo right now. And if it does ever come back, chemo would be more effective then, than now. Since the cancer was confined to the testicle, odds are it hasn't spread. So, all good news.

Next post will be about my weird conflicted feelings on all this. I should be happy, but this is weird.

Post follow up appointment

So, I had a follow up appointment with the urologist today. He got the results from the blood tests, and the disection of my ball.

Yup, it was cancer. It was confined to the testicle. It had started to get into the lymph system in there, which is how cancer spreads. The scans shows my lymph nodes hadn't enlarged. The tumor markers in my blood were coming down as expected. So odds are, taking out my ball stopped it all.

But... I'm still being referred to an oncologist for follow up cancer care. We don't know much about that right now, but it will probably involve a few rounds of chemo, just to make sure it's all gone.

So, not out of the woods yet, but things are looking good. Next step is more waiting for the next appointment. I hate the waiting.

Follow up appointment

So I have a follow up appointment tomorrow. The last appointment like this I didn't expect the tests to come back so soon, and I was diagnosed, and my wife wasn't there. That was hard. Hard in hearing that alone, and having to come home and tell her. Hearing the diagnosis wasn't as hard as telling her later.

But anyway, another appointment tomorrow. Odds are taking out my ball was the end. Gods I hope this is the end.

To be honest, I'm scared about tomorrow. I'm scared it's not the end. Yet I've seen the numbers from the blood tests, I've seen the CT results, this should be the end. But I'm scared it's not.

I guess all I can do is go to the appointment, ask questions, and see where we go from here.

At least I'll have my wifey with me this time.

Emotional Updates

So, as promised, the second part of the updates. The technical updates are easy, just reporting facts. This update is a little harder to write, since it's about how I'm feeling about all of this so far. To put it simply, there are a lot of conflicting feelings right now. From the technical updates (perhaps those should be renamed 'bio' updates?) everything looks good. And we have an upcoming appointment to see where we go from here. They took my ball out, and are running tests on it. I went the other day so they could take blood and run tests. There are so many tests we are waiting on. More on that later. First, as I've said, the ball they took out was rather large. Now that it's out, my nether regions are much more comfortable. Sitting, walking, driving, all much easier without a baseball between my legs. Second, it looks weird now. Before all this, I had two normal balls, and they hung around as expected. Then one decided it was gonna play king of the sack, and took over. For a while, I couldn't even see the other ball. Now, it just kinda looks weird down there. I'm trying to figure out how to explain this. Imagine a rubber balloon, blown up beyond it's capacity, yet it didn't pop. Now let the air out. It doesn't go back to it's original shape, but rather it's all stretched out and saggy. I heard once someone describe this as "a lonely ball hiding behind my penis", and that sounds about right. One little ball (comparatively) in what is now a sleeping bag that is way too big, hanging out and hiding. As a man, I never put too much faith/esteem in my balls. But seeing how it (because there's only one now) looks, it kinda has an effect on my manly self esteem. I'm sure I'll get used to it. And I know my wife won't care. But at the moment, I kinda care how weird it looks. Maybe weird is the wrong word, just not something I'm used to seeing, and they were mine, so I was used to seeing them quite a bit. Which leads into my third, it was mine. It was my ball. Two things here. It was mine. It was a part of my body, and it went rogue, and betrayed me (thus the blog name). It makes me think about what else could go wrong. I didn't do anything that might cause this. (Granted I might be doing other things that might cause other problems, but that is outside the scope of this blog.) My own biology let me down, and tried to kill me. That is not an easy idea to accept, or move past. And the second thing here, the docs took it. They took my ball out, and left me like this, 'half a man'. Sometimes it seems like all the docs want is tissue and blood to run tests, and they don't focus on the person, me. I am not my ball. I am me. Run all the tests you want docs, but remember, behind all those tests is me. Me. And I guess that brings us back to the 'later' comment above. After hearing about the clear scans, I was a bit relieved. Also at the time, I had surgery recovery to focus on. Now, there is nearly no pain, the suture glue is wearing off, and I'm about done with that recovery. So now I have time to think about what next. What happens after all these tests? What options will I have? What if I don't have any options? And the hardest part... waiting for results. Waiting to know where to go from here. If I am close to free and clear after this, then YAY! But if there is still chemo, and radiation, and sperm banking JIC, and more pain, physical and emotional, after this, am I ready for all that? Are we, my wife and family, ready to deal with that? If it comes to that, I know we all will deal with it, but are we ready? Can anyone be ready for that? I am on a cusp, and I don't know which way I'll fall. From what the docs have said, I should fall on the good side, but there still is a chance I won't, and, however small that chance might be, that still scares the shit out of me. So, that's that. In writing this, I've had an idea for another post. That post won't come until after the appointment on Wednesday, since it really depends on the outcome of that meeting with the doc. I'll also post soon on the importance on Men's Health, with some useful links with info and ways to donate. Until next time...

Technical updates

So I promised a few updates. Here is a technical update. An update I'm not emotionally invested in. Yet.

The surgery went well. A week later, I'm at about 90% back to normal. After the surgery, the doc came out and spoke to my wife and me dad. The scans looked clear. Odds are it hasn't spread. I need to get more blood tests done, and if the numbers are coming down as expected, then all should be well. As I understand it, they need to run some tests on my balls, the one they took out. And then we'll know more.

I have another appointment with the urologist next Wednesday to find out about the numbers and the tests. From reading online, I'll probably be offered a choice. Monitor, i.e. feel myself up frequently and look for changes, or chemotherapy as a JIC measure.

Before making that decision, there are still many questions to ask. Updates on this after the appointment.

Next post will be more personal, on how I feel after the surgery, physically, emotionally, mentally.

Updates pending...

So the last posts were before the surgery. I've updates to post since then, but it's late, and I'll write about them tomorrow. Let it be known, I'm still here. Actually, I'll have two posts tomorrow. Stay tuned.