State of, oh hell, me.

Smiter

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For those unaware I’m fighting against basically a form of cancer. For those that want to look into it it’s named Multicentric Castlemans Disease. It’s a cancer like illness that attacks your lymph nodes. It’s generally treated the same as cancer and I’ve been on an experimental medicine since spring of 2019. My doc told me it’s chemo in pill form and supposed to be easier on me. It’s at the no BS stage of trials where I pretty much know what it is, I’m not getting a placebo, and I have a good idea of the base side effects. I’ve dealt with pretty much every side effect you can have from all the skin peeling off my feet to all the skin peeling off of my mouth.

Easier on me? I’d hate to see the raw form. I’ve puked more in the last year than I have in my first 40 combined.

I have days that I cannot golf. It doesn’t mean I won’t try if I’ve scheduled it, but I know from the get go that any scoring is out so I may as well try to hit every shot. I’ll walk off the course knowing I hit a couple.

I have 12 current prescriptions and if you count the other meds I’ve tried the past year, it’s almost an infinite combo. I’ve found something that mostly works.

Today has been tough. My legs have hurt all day long. I have plenty of pain meds that I could take. They have baggage too and I won’t go there unless I have tears rolling down my face. I didn’t care for getting off of them after my accident and I don’t want a crutch. I won’t have a crutch. It’d be too damn easy, but I have zero desire to go there. None.

It sucks that I can’t trust myself to take something, but it’s a slippery slope. I don’t want to not have the option when I get a kidney stone and I know if I misuse them, it won’t be an option. They’ve scared me straight so to speak. But I can’t survive many days like today. My legs hurt. I’m not whining, just stating. For those that hurt, you know.

I’m counting down to January. I’ll either get good or bad news but I plan to relocate to a property I just acquired. It’s a beauty of a piece of land. Mountains on 3 sides, the ocean on the 4th. Salmon stream on one side, trout on the other (I think?? from the Realtor and survey plots). I’ll live out my days there. If news is good in January, I’ll delay it probably 10 years, I’m still relatively young at 42. If news isn’t good, I’m still going.

I plan to go up this spring regardless. There are no structures on property so I want to go up with my kids and pick out a spot to build on. From surveying satellite I already have the spot picked out but it’s an exciting adventure. I’ll be there either next year or in 10 or so. I want to see it this spring though. I need to.

When I move there I’ll be going there to live until I die. Whether that’s 1 year or 30, that’s the plot of land I’ll die at.

Makes those unsure drives to work a little more sure when you have a place you plan to go and die at. Not anytime soon hopefully, but....

It’ll be what it’ll be. I feel I’m winning this fight. I just don’t know if the will to fight on will be there if I have to face it again. Or anything similar. It’s 12:06 and I haven’t got out today (yesterday) at all. Nothing. I just have nothing in the tank right now.


2C614653-A588-423F-BD62-DF98B95AB2BF.jpeg

Rather crude drawing, but it’s an approximate of where I’m heading. I’ll have to take float plane into the lake and head down via raft (and I do have stream access to the property)

I plan to build in the lower left of my crude drawing. Whatever I can float in and build in a season, that’ll be my home. Option B is more in the clearing but I’ll want water access within sightline.
 

MaybeDuffer

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Wow, man. That sounds tough. I hear and see stories like yours and my "problems" seem downright inconsequential, by comparison. Don't know what to say except I'm pullin' for ya and damn sure hope you beat this thing. Sounds like you sure do have the gumption to do it, if anybody does.

One of my best friends was in a very, very similar place, only with Hep C. He got lucky. They came up with a cure that actually worked just in time. Had they not, he'd probably be gone by now. Your attitude reminds me of his. Despite what the disease and the attempts to cure it, or at least control it, were doing to him for the longest time, he maintained a never give up, never surrender attitude.
 

DataDude

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@Smiter, been praying for you for a while. That looks like a beautiful plot of land. What state is that in?
 

Parrot

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Been praying for you, @Smiter. You shown an incredible amount of resilience and fortitude getting to this point. Looking forward to hearing more about your piece of nature. Hang in there.
 

Junkyard

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If I read between the lines of your post, I honestly believe that there is a lot of fight inside @Smiter . I'd be naive to think there is something that I can say here that will reduce your physical pain, but I hope that you know you can rely on the THP community to help ease some of your emotional pain. I've never had the pleasure of meeting you in person, but I have learned a lot about you through this forum, and can honestly say I know you're a good person.

Please stay positive between now and January, the community that is THP is here for you until then and beyond regardless of what news you receive. I think it's awesome that you have a plan for the future, and I sincerely hope that you don't get to fulfill it for a long time. Thoughts and prayers continue for you @Smiter
 

thewilderside

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Like others have said, I'm not naive enough to think I have the magic words to make things better. I will keep you in my prayers, and it sounds like you have the attitude to keep on battling.
 

Rummpd

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PM me if you ever feel a need to reach out. Not an oncologist but worked at FDA 9 years and am still a researcher and doctor in another federal agency and know how to look into clinical trials etc. and know cancer researchers at NIH - in the meantime best to you in dealing with this.

You have probably seen this at NIH but it might help others understand the enigma that is this terrible disease.


PS I greatly admire your spirit and the property looks interesting.
 
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GoldenBuff

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Thanks for sharing. I don’t know what to say other than cancer sucks. I love your vision for your property. 👍
 

Smiter

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@Smiter, been praying for you for a while. That looks like a beautiful plot of land. What state is that in?
It’s in SE Alaska. When I fly in the closest airport is Ketchikan. I’ll have to take a float plane from there to access it. Which is the only reason why I could afford it, lol.

Thanks all for the thoughts and prayers. I love this place and the folks here. 99% of my Internet time is spent on here. I don’t make a ton of posts for the amount of reading I do. It’s nice getting home from somehwere where I haven’t used my phone for THP for several hours and getting caught up on what’s going on, checking PM’s etc.
 

finsfan21

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Prayers man. You got this! Sister lived in Ketchikan for a while. Her family loved it. You will too, in 10 years.(y)
 

Smiter

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Again I appreciate all the support. This place rocks and if nothing else it allows me to get my mind off of everything for a while.

I was just texting with @Hamfist he's alive and well. (This was put so he can find this thread IF he ever logs in again, ha.
 

Jmk202

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Gotta have the things to look forward to and enjoy. But you already know that!

can’t wait to get all your updates as you build the new place and send us some amazing pictures!
 

Reframmellator

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Words are easy to say or send, but you live this quote, my friend:

A champion is someone who gets up when he can't - Jack Dempsey

Prayers for you and your kids for many, many, many great years in your new home.
 

chile

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hard to find words for what you're enduring but the fact that you are is amazing. here's to many years to come.
 

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