Saturday, August 6, 2016

I'm Really Hoping I Can Claim PTSD

My return from the UK/Ireland leg of the GCW Tour has been a challenging homecoming which ran something like this...

Sunday -- jet lag day. We took off at 9:30 am London time, flew for some nine and a half hours, and landed in Seattle at 11:30 am Seattle time. I made it to about 7:30 pm before I gave up and went to bed. 

Monday -- agonizing abdominal pain day, number one. The obvious question is, was this new pain, or continuing pain? Unfortunately, I can't say. I was sort of busy in the UK, so I'm not sure if I was in pain or not. I sort of blocked it out. But Monday was pretty hellish.

Tuesday -- agonizing abdominal pain day, number two. By Tuesday the pain was so bad that I only lasted an hour and a half at work, before I gave up, went home and started downing pretty much every variation of stomach relief I could find. It didn't really help, so at 11:00 I sent an email to my providers at the SCCA. At 4:00 they called me, asked a few questions, and then sent me to the ER. 

After a couple of hours and some routine checks, the ER docs gave me Dilaudid, which was quite nice. Then, after a few more hours and a CT scan, they gave me a pint of magnesium citrate, which was a lot less nice, but between the two the abdominal pain was pretty much eliminated. At least for the time being.

Wednesday -- my first vaguely normal day in a while. You gotta take 'em where you can get 'em. 
 
Thursday -- mental health and return of abdominal pain day. A few weeks ago my provider team was worried about my mental outlook and so an appointment with a psychologist was scheduled, but, given the demand, it takes awhile. Today was the day. It was an interesting conversation, which I'll get back to, I'm sure, at some point in the future. Unfortunately, the abdominal pain also started back up again.

Friday -- probe day. We will skip the details of the sigmoidoscopy, and just summarize by saying that it's definitely one of those experiences you can be born, live your life, and die without experiencing, and you will be better off for it. And, unfortunately, it's one of those terrible experiences which ends with a doctor giving you a bunch of substantive information while you sit there trying to get over everything that's just happened. Thus, there's a very good chance I misunderstood what was being said.  

But here's what I heard:

1. I either do, or do not, have a tumor near the end of my colon. At one point I though the doctor said he saw a tumor, but then he didn't take a biopsy which I sort of would've expected. So who knows? I supposed I'll get clarity next week when I see my oncologist.

2. I either do, or do not, have an irritated section in my colon. It looked irritated (i.e., bloody and nasty) on the TV to me, and I thought I heard the doctor make comment about it, but I could be confused.

3. This one I'm really hoping I misunderstood, but I'm pretty sure I was told that my colon has essentially stopped working. It's a very odd experience to be told by a doctor to avoid vegetables, but that's what I heard. Eat only protein, avoid fiber in any form, be prepared to suck down industrial grade laxatives on a regular basis, and get used to the abdominal pain.

In other words, the last few weeks weren't an anomaly. There's no problem that can be fixed. This is just the new normal.

Or I was suffering PTSD and misunderstood everything that was said.

I do really hope that's the case. It can't bode well to have a non-functioning colon, and too many days like Tuesday would definitely prompt a desire for the immediate acquisition of some killer drugs. 

In short, not my best week in recent memory. 

3 comments:

  1. Well, this news totally sucks. Maybe Lonsurf is part of the problem? Hoping you oncologist has some answers for you PDQ

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  2. Your strength amazes me-- You are getting in so much travel, and working, and going through trials. I hope this new drug helps you. Amazing what you are doing for others by using the trial drugs and by sharing your experience.

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