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.