|
Post by Thomas Eversole on May 29, 2016 8:57:15 GMT -6
Another void trial aka "Can Tom actually pee this time" on Tuesday. NOT looking forward to it. I suspect that something got rearranged to the point of causing permanent damage during my surgery, and that's why I haven't been able to urinate myself without extreme straining. ....that being said, I can expect another Foley catheter that day, and then a dick scope after that.
I'd rather get mugged at knife point.
Been having regular bowel movements since Saturday. That's right. All of a sudden, after over a month of pooping in a bag, I have to go poop like a regular person as well. Makes no effin' sense.
I'm sure most of you have noticed that the things I post regarding my conditions, my attitude about it is 99.93785% negative... well, things came to a head last night, for my wife. About 8pm, I had my 3rd ostomy bag of the day start leaking. The 4th and 5th bags started leaking before my wound dressing could be completed. So, they lasted like 3 minutes each and it takes an hour plus to setup and get one on. Here I am, 11:30pm at night, after filling trash cans with failed attempts, after bathing in my own sewage, just standing in a shower with no bag no nothing, neither of us knowing what to do.
She's mad at herself (because she can't fix it) and she's mad at God (because he's allowing me to suffer, I guess).
Made me really think of my own breaking point, you know? I've thought of killing myself way more since late April than I ever did in the depths of my alcoholism, over 10 years ago. I swear having extremely intense pain every. single. day., day. after. day., it. never. stops. is going to eventually give me PTSD.
Just because I'll always love God doesn't mean that I won't always resent him for all of this. I'm definitely balancing on the fringes of "Who cares if I'm cancer free. Who cares if piles of people are behind me and praying for me if I'm SUFFERING - EVERY DAY - MORE than anyone else I know, and it never stops!"
"Well, the pain from the bags will stop after the surgery" - yeah, but all new pain will come in.
I know this wreaks of being entitled, but God is totally coming across like a "can but won't" kind of guy right now. I'm not Job - I will BREAK. I can't keep doing this!!!! I feel like I'm totally drowning here, and God, holding a life preserver says "I'll allow it. He's strong enough.". NO I'M NOT.
Man, if I did that to someone, I'd be a total dick.
|
|
|
Post by nocturnaliridescence on May 29, 2016 10:19:26 GMT -6
"I'll allow it. He's strong enough.". NO I'M NOT. I wasn't strong enough the times I was suicidal in the past. Heck, I wasn't even strong enough a month ago when I made that thread in Spirit of Anonymity, and that was just normal depression. And I did survive those points in my life, but I don't say that to brag. Because it wasn't me who did the "surviving". I experienced those things for a time, but it was God who got me out of them. The emotions I felt were constant, like I was never going to be able to move past them, that I would carry my agony and confusion to the grave. They weighed heavier on me than I could possibly bear, which are the same feelings you're describing now. But it was God who carried me through those times, and after a lot of pain, I did move past them, and came out much stronger for them. Again, as a result of what God did. Not what I did. So while those times obviously really sucked, everything ultimately worked out for the best, which is what God wants for us. The pain hurts, for now, but it's not because God doesn't care - He does. And we know that all things work together for good to them that love God, to them who are the called according to His purpose. - Romans 8:28 I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world. - John 16:33
|
|
|
Post by Thomas Eversole on Jun 2, 2016 10:30:32 GMT -6
I think where I'm getting tripped up is that emotional and mental pain is vastly different from physical pain. The key solution to stress, depression, anxiety, etc. is a cognitive change. A cognitive change doesn't do SHIT when it feels like you've got a knife in your stomach or broken glass in your dickhole. _______________
Speaking of feels like broken glass in my dickhole, I stalled all I could for my catheter. It just got pulled a few minutes ago. Please pray - please! - that I can urinate and that my complete freaking out doesn't prevent me from urinating.
I was pleased to find out that my reversal surgery should only take 45 minutes. Should be a much faster recovery time.
I should have my port surgically installed next Wednesday. Not thrilled about yet again, another procedure - I'm starting to feel inhuman with all these synthetic parts. ...but once that's in, goodbye to getting jabbed in the arms for blood draws and IVs.
|
|
|
Post by Deepfriar on Jun 3, 2016 5:02:05 GMT -6
Praying.
|
|
|
Post by Kerrick on Jun 3, 2016 8:48:50 GMT -6
Praying!
|
|
|
Post by Bartimaeus on Jun 4, 2016 10:09:41 GMT -6
Praying for you, Thomas. Hope the wound is healing ok and you were able to urinate. It is truly remarkable the number of things I take for granted, like being able to pee without excruciating pain, dropping a deuce the old fashioned way and not in a bag and not getting poked like a pincushion. God bless you, brother. The night is darkest before the dawn.
|
|
|
Post by Thomas Eversole on Jun 4, 2016 11:35:16 GMT -6
The good news is, I CAN urinate. ...so that's a very good thing. It still takes some force and some patience (not a full stream) but I can void without squatting like a weirdo and pushing so hard I get dizzy, only to have a dribble come out. Its gotten a little better even starting day two and hopefully, in a couple months, I'll be peeing like I was in 7th grade. Hey, I've taken that sort of thing for granted as well. Even more than the act of peeing, I have to get used to urine being in my bladder again. For over a month, I had a tube take pee out so I didn't "hold" pee. Still drives me crazy a little bit when like half a cup of urine is in my bladder, but I'm trying to train it. While I am having semi-regular bowel movements (my surgeon said its normal after a month because my ileostomy is a "diverting loop") its pretty annoying with the bag AND pooping. A poop sack is gross. It just looks like hell, its virtually impossible to empty and clean without getting shit on my hands, and if I get gas (which is every day) I've got to burp the thing outside because even with a charcoal filter, it has a horrid stench. Also, since they took out most of my rectum, (and that's the reservoir with nerves that signals the person they need to dump) I will have a certain degree of urgency for the rest of my life. Absolutely NOTHING compared to having to crap every 20 minutes like before, when the cancer was still there though. (The "diverting loop" is something that makes a lot more sense when you see the picture - its the one on the left, though mine is more under the skin. This is NOT a screenshot, but a drawn diagram.) I got pretty nervous closer to the other surgery, but not as much for the reversal and port installation. Just a little bit. They're not going to piss off my bladder again so that should keep getting better and I'm not going to be hanging upside down for 5 hours so I shouldn't have as much referred pain. ...plus, I've been poked, prodded, knocked out and had so much pain this entire time, its not like it can get a whole lot worse - unless something goes wrong. God, I hope nothing goes wrong. _________________________ Most of you know I live in a village, and last week, we had a Dollar General open up that's 2 blocks away. Even in my condition, that's still walking distance. Still, its obvious I'm not a healthy/regular 35 year old guy just walking in. People stare. Even had some particularly friendly customers in the store look at me for a few seconds and initiate a conversation with "You just had surgery, didn't you?". I'm just going to be happy that I'll be DONE with going under the knife in a few weeks. ...and that my life can start to get back to normal while I'm doing chemo. I thought my Oncologist was going to be ticked when I opted for the reversal surgery first, until I told him that last week I went through a month supply of ostomy bags in 3 days. He was shocked and certainly didn't blame me for my choice. The bag situation is better though - I've gotten the last few to stick 36 hours before they start to leak. Who would have thought that marshmallows and showers would have been the key to getting these things to stay on. My wound is being troublesome - it itches like hell. _________________________ I really appreciate you guys continuing to pray for me. If I can add something to the list though, my doctor said that he doesn't want me to lose more weight. I've lost over 40lbs since all of this started and I wasn't exactly overweight to begin with.
|
|
|
Post by Kerrick on Jun 5, 2016 10:14:31 GMT -6
Wow, this is mostly good news! I am still praying for you and I hope that more good news comes soon. Even though things are still far from good, they do seem to be improving and that is hopeful...
|
|
|
Post by Thomas Eversole on Jun 8, 2016 9:34:28 GMT -6
Wish me luck. My port gets surgically installed this afternoon.
|
|
|
Post by Thomas Eversole on Jun 8, 2016 10:01:31 GMT -6
I just wanted to throw out a blanket apology to those on this forum, if I've been interpreted as snappy or a jerk on other posts. Its certainly no excuse, but I've just been this way (with everything) because of the junk going on with my health. If anyone wants to talk about it publicly or privately, I'd be more than willing to do so.
|
|
|
Post by Thomas Eversole on Jun 8, 2016 15:25:26 GMT -6
The surgery went fine. Pain is moderate. Time to go home, relax and manage pain after eating something. Haven't eaten since last night per doctor orders.
Another surgery down, one more to go...
|
|
|
Post by Thomas Eversole on Jun 8, 2016 18:41:18 GMT -6
I woke up from my nap in a lot of pain. I'll have to temporarily go back to my original pain medication dose.
I'm also really cold and hope I'm not getting sick or dehydrated...
|
|
|
Post by Thomas Eversole on Jun 14, 2016 8:31:18 GMT -6
My 3rd and hopefully final surgery is tomorrow morning. Please pray that everything goes well.
I'll be glad actually, because tomorrow is the last day I'll have a poop sack. It's nasty and painful so life will be much easier without it.
|
|
|
Post by Kerrick on Jun 14, 2016 9:38:29 GMT -6
Right on. Please let us know how it went as soon as possible! Will be continuing to pray.
|
|
|
Post by Bartimaeus on Jun 15, 2016 6:15:19 GMT -6
I join the others in lifting you up in prayer today, Thomas. May the GOD of ALL wisdom comfort you and keep you in peace today. May GOD guide the surgeon's hands, steel their nerves and calm their hearts. We pray for all who are involved in this surgery today and in your recovery, that GOD would gain glory! Soli Deo Gloria
Keep us updated.
Romans 16:20
|
|
|
Post by Thomas Eversole on Jun 15, 2016 8:02:03 GMT -6
Thank you very much. I'm at peace this morning - not very anxious at all. It's probably a combination of my surgeon confident with the procedure and that it will only take 45 minutes. Also, just had surgery last week - it's hard to be nervous about something done every week. Also, I have an infusaport now so I don't have to go through people missing trying to start an IV. Plus, the results of this surgery are something I WANT. The first surgery had to be done to save my life. This one is much less invasive will remove a huge inconvenience. (Of course, my ostomy had to be a jerk one last time with a bag leak last night and this morning)
I'm also glad that this is the second to last cancer hurdle. Only chemo left. I've got to be there at 10am, surgery starts at noon. (CST)
Thanks again for the prayers and I'll post again when I'm in recovery.
|
|
|
Post by Thomas Eversole on Jun 15, 2016 19:44:11 GMT -6
Bad news: - I came to after surgery in so much pain. Like, I could barely talk and breathe. That poor nurse was running around like a chicken with her head cut off, giving me as much dilaudid and fentanyl as she was allowed. One hour felt like half a day with that much pain.
That's the end of the bad news. [evillaugh]
Good news: - That port is freaking AMAZING. Before surgery, I was speaking with my anesthetist and didn't even realize they drew blood and started an IV. I thought they were just getting started, but they were done! So much easier and less painful. - My pain is now under much better control. MUCH better. - NO CATHETER. I hate those things getting taken out too, and I was able to pee, a little bit. I don't feel like I need to pee, which is a little strange... - My surgeon said that my procedure was "textbook". In other words, it went as well as it possibly could have. - They were hoping I'd be able enough to get up and walk tomorrow, but since pain is moderate, I actually got out of my bed and walked FOR 20 MINUTES. Actually ended up JOGGING a little bit. I knew that ostomy always hurt, but I didn't realize how much until that burden was lifted.
- First and foremost, I feel uplifted spiritually. I'll say it - today was the happiest I've been in weeks. I'm DONE with surgery. I'm almost done with cancer treatment. A HUGE nasty inconvenience is literally cut out of my life. I have a new lease on living and I want to get back in shape (gain back strength and weight). I want to go back to work. I want to get back to writing music!
...and with a little time, there's nothing to stop me from those!
I have prayed quite a bit today. Like the typical prayer theme through most of my cancer journey usually starts with "please help and guide me" and ends with "Thank you and I love you." God is totally awesome and I'm getting together a list of things I want to do for Him.
|
|
|
Post by _ on Jun 15, 2016 20:25:36 GMT -6
This is truly awesome to read. Thank you so much for sharing your journey and encouraging us! Dude, I am excited for your next steps. Praise God for His fellowship during those/these tough times.
|
|
|
Post by Kerrick on Jun 16, 2016 3:50:25 GMT -6
My goodness I am so glad that those huge hurdles are over for you. God is good!
|
|
|
Post by Thomas Eversole on Jun 16, 2016 17:28:37 GMT -6
I think I spoke too soon on this hospital visit. I think I'm getting sick. I can't get warm, even with hot blankets on me and my voice is hoarse. I pee and fart a lot, but no poop yet.
I'm expecting to be here maybe some of the weekend. Worse than getting used to urine being in a bladder is getting used to feces in intestines. I've had two meals and I just feel bloated and like it's stuck in me.
All I can really do is push fluids and keep eating in hopes that turds get expelled.
|
|
|
Post by Thomas Eversole on Jun 16, 2016 19:19:58 GMT -6
My surgeon seemed to think it was a good sign I was hungry and passing gas. I'm in too much pain though. Pain management is one of those go home factors, and I was in denial, thinking I was a 5, when really I was a 10. Now it seems like torture/forever waiting for all the legal hoops to approve more pain management...
Sucks to be me. I really shot myself in the foot here...
|
|
|
Post by _ on Jun 16, 2016 20:08:43 GMT -6
Damn dude, I'm sorry to hear that.
|
|
|
Post by Thomas Eversole on Jun 16, 2016 21:38:27 GMT -6
...obviously, when I mentioned moderate pain, I was on a dilauded pump. It got much worse trying to go from that to 1 7.5mg Norco every 6 hours.
My surgeon agreed to 2 pills every 4 hours, but never put the order in.
I'm calling my case manager tomorrow for my insurance on how my caregivers really dropped the ball.
|
|
|
Post by Thomas Eversole on Jun 17, 2016 13:43:05 GMT -6
I'm out of the hospital and ready to start recovering. So glad to be reversed and that I can eat normal things again.
Had a few complaints about my hospital experience, so I'm following up with their patient advocate about it. Things like an absence in necessary pain management on multiple occasions, this tech that didn't know what she was doing (her words); who dropped a pressure cuff on my face and took my temperature without the sanitation sleeve. She shoved the metal so far in my mouth I almost gagged.
I think things like that need reported - then I'll be done and moving on from that, on to happier things.
|
|
|
Post by Thomas Eversole on Jun 18, 2016 8:14:08 GMT -6
One of the patient advocates called me back after I left a message. They're going to investigate and file a grievance in regards to what I complained about.
|
|
|
Post by Thomas Eversole on Jun 29, 2016 15:31:08 GMT -6
Haven't been doing very well lately. All I want to do is sleep and apart from restroom trips, I've done so almost 24 hours straight.
My pain is worse than when I first came home. Probably some of that is it a hard to take my meds every 6 hours when I'm sleeping. ...The other is I see hints of infection. (It's not full blown, but I see hints of it.)
|
|
|
Post by Thomas Eversole on Jul 6, 2016 9:33:12 GMT -6
I start my chemo on Monday. Being that my birthday is in a few days, it kind of feels like "Happy birthday, here's some needles and poison."
I really don't want to permanently lose the feeling in my hands... which can happen with the type of chemo they want to give me. That would mean goodbye to being a musician.
My doctor told me that again today...
|
|
|
Post by nocturnaliridescence on Jul 6, 2016 11:01:47 GMT -6
Hm.
Losing feeling in your hands wouldn't mean you'd have to stop being a musician. (Unless you meant losing the actual use of your hands?)
It'd be more difficult for a time, but theoretically you could adjust. Beethoven was almost completely deaf.
|
|
|
Post by Thomas Eversole on Jul 10, 2016 12:28:58 GMT -6
I've mentioned this in another thread, but I too am very hard of hearing - but that hasn't stopped me with Orationem or Ankou Awaits. (my hearing wasn't too bad when I was actively doing Hguols)
I should elaborate - the chemo I'll be starting tomorrow is several different chemo's. One of them COULD (not will, but COULD) cause loss of feeling in my hands AND neuropathy. (fancy word for nerve pain) I did ask the doctor if this PERMANENT loss of feeling/pain would interfere with me being a musician, and he said YES.
Because of this, they did agree to immediately stop that chemo if I do develop symptoms, but... that's kind of like putting out the fire after the house is burned to a crisp...
|
|
|
Post by tolencual on Jul 11, 2016 7:58:39 GMT -6
I've mentioned this in another thread, but I too am very hard of hearing - but that hasn't stopped me with Orationem or Ankou Awaits. (my hearing wasn't too bad when I was actively doing Hguols) I should elaborate - the chemo I'll be starting tomorrow is several different chemo's. One of them COULD (not will, but COULD) cause loss of feeling in my hands AND neuropathy. (fancy word for nerve pain) I did ask the doctor if this PERMANENT loss of feeling/pain would interfere with me being a musician, and he said YES. Because of this, they did agree to immediately stop that chemo if I do develop symptoms, but... that's kind of like putting out the fire after the house is burned to a crisp... Man, that would be rough. Still sending up prayers for you sir.
|
|