If you've missed any parts of this saga, you can catch up with the links below:
Part 1 (April & May)
Part 2 (June)
Plus (Baby's First Coloscopy)
We're still in a holding pattern, of sorts, and it's really starting to get to me, guys. Every day, I wake up thinking Today is going to be a good day... we're going to do everything we're supposed to do, we're gonna stay on our schedule, and nothing is going to be weird or abnormal. And then something happens and the schedule goes out the window. I'm a creature of habit. I like knowing that on Monday, I'm going to take him to work, go to the gym, come home and shower, work from home, pick him up, make dinner, go to bed. But if he doesn't go to work, we sleep in, so I don't go to the gym, so I don't get my shower, and then I shower before I go to bed. Part of it is me, I know that... I know that I can still get out of bed and go to the gym, but I have no willpower; the minute that something different happens, I use it as an excuse to not do things. I hate this about me, and I complain about it a lot, but I never get around to actually fixing this problem....
Sigh...
So, on August 1st he expected to wake up and go to work, but when he stood up out of bed, he said that he felt extremely dizzy and lightheaded. This carried over for the next few days as well. He was feeling better and went back to work on August 8th and did a full week with no issues.
He had another round of labs on August 12th, and we were ready for his MRE on August 14th, but it got cancelled because Blue Cross Blue Shield hadn't approved it yet. We also had a follow up with Dr. L who said that he was stable and that he should keep on tracking his blood pressure and watch what he eats.
On August 15th, he had his Peeper View (Cystoscopy) and a prostate exam. Bless his heart, the Urologist wasn't all that... gentle... with the exam! I left the room and hung out in the hallway, and within seconds I heard a weird combo of "oof!" and "oh!" and then the doc was out of the room and I went back in, trying not to giggle. Hubby had never experienced a digital exam before, so he was grossed out with the lube and the finger and the whole thing and me - a vagina haver - was like, what's the big deal?
Anyway, the nurse came back and to clean and prep his peeper, then the doctor squeezed some numbing gel into hubby's urethra. At the same time, the nurse uncovered the Cystoscope, and my god... Hubby's eyes about popped out of his head! He said later that it looked like an immersion blender.
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| This looks like a creepy mechanical iguana, lol |
The cystoscope has a little light and camera at the end, and it's connected to a TV so that the doctor can see what's happening, and I got to see the entire thing. I won't lie, it was cool as hell! Hubs wasn't as impressed, and he was uncomfortable, and let out a few sharp oofs at one point. We saw a (benign) polyp in his urethra, and the entire bladder. They used the cystoscope to inflate the bladder with water to stretch it and make reviewing the tissue easier. I didn't time it, but I'd say that the entire process from numbing to retraction was maybe 5 minutes? Once done, they left him to clean up and empty his bladder in the bathroom nearby.
As expected (and I'm so frustrated by all of this), he didn't see anything. Maybe a redness that could be a result of a past infection or problem. He wrote an order for a FISH Test (Fluorescence in situ Hybridization) which is a test that can detect genetic abnormalities associated with cancer. FISH testing may be more reliable for looking for abnormal cells, and may detect bladder cancer up to 6 months earlier than other methods. Interestingly, on the lab order, they have Hubby diagnoses as Chronic Kidney Disease Level 2 - not even Dr. L has given us any official diagnosis.
As he feared, but fully expected, he woke up the next day with LLQ pain again. Most likely all of the ab-clenching and tensing up during the Peeper View triggered another bout of pain and he missed an entire week of work.
On August 22, he felt ready to go back to work, but he was waylaid by gastrointestinal issues (like three poop stops in an hour type of issue) that stuck around for multiple days. He stayed home again, and because he had to fill out some official paperwork with Home Office that took absolutely forever (!), he didn't go back to work until after Labor Day!
On August 27, we had a full schedule. First up was an MRE (Magnetic Resonance Enterography), a special type of MRI that uses contrast material to produce detailed images of the small intestine. It's often used to evaluate for things like Crohn's Disease. When we got to the medical plaza, we were called back and he was given four containers of VoLumen (20oz each, I think) that he was supposed to drink within an hour! While I was paying attention to the nurse and what he was saying, I could see Hubby next to me mentally withdrawing and already shutting down inside of his head... I can't drink that, there's no way, I quit, let's go home... those kinds of thoughts. I asked the nurse what would happen if he didn't drink enough, and was told, point-blank, that the MRE would be cancelled, we'd need to reschedule, and he'd have to drink again. So, I made Hubby put on his Big Boy Pants and drink.
It tasted like flat room-temperature Sprite, which was weird. He got through the first bottle in 20 minutes, and most of the second bottle in the next 30 minutes. (If you can math, that means he's way behind schedule, and things aren't looking all that good). The nurse called us back again so that he could change in to scrubs. He said that Hubby needed to at least drink three bottles or it was a no-go. So Hubby continued to chug while he changed. The nurse also asked if I wanted to be in the room with him while he had the MRE (I didn't think that was an option), so I needed to put on scrubs too. Both of us had to be 100% naked under the gowns (plus those fun grippy socks), with no jewelry, hair clips, glasses, etc. The rest of our stuff got shoved into a locking drawer and the nurse held on to the key. By the time he got to the MRE machine, he was full of 2 3/4 bottles of VoLumen (much less than he should be, but he got the go-ahead from the nurse, so...)
Inside the MRI suite, he went in feet first with his hands above his head sticking out of the machine. They gave him a button to push in case he needed to tap out, and both of us got earplugs because the machine is very loud (especially inside the machine). Some machines allows for music inside, but this one didn't have that feature, so he was just in a Pringles can with his own thoughts. I was able to stand next to the machine and hold his hands, and at first, I was just giving him some gentle "I'm here for you" squeezes. For many of the scans, he was required to hold his breath for anywhere from 8-19 seconds, so we worked out a system that I'd squeeze at the halfway mark (4-9 seconds) and double-squeeze when it was over. This seemed to calm him down well, and after about a half-hour, he was done with all the scans. We changed back into our real clothes and headed home. He was still full of VoLumen, so he didn't really want lunch.
After lunch, we had our last follow-up with Dr. K (the virtual doc); she felt like Hubby was in good hands with Dr. L and ARNP LeBlanc, and asked that we just check in with her every once in a while to let her know how he's doing, especially if (when) we get a true diagnosis and a reason for the diagnosis. But until then, we were done with her; no follow-up appointments in the future.
We had a few hours to relax but then we had to go out again, this time for his Wellness visit with ARNP LeBlanc. This was more of a routine doctor's visit, not specifically for his pain or kidneys. She suggested that Hubby have his lipids checked for high cholesterol, but other than that, she was fine with what Dr. L was doing, and sent us home with no additional info or follow-up appointments.
So at this point, he's still on leave, but that's because Home Office sucks, not because he's not feeling well. Here's hoping that he can get back to work soon and we can put all this pain and poop and dizziness behind us and get back to real life.
