I saw Dr. Khan this week as a follow-up to the persistent nausea, plus my abdominal and joint pain and edema. Dr. Khan and Dr. Dunn are really working well together to figure out what is going on with me. He had a couple of new ideas that he wanted to run past her. For the nausea, one thought is maybe stretching the pylorus (the muscle at the end of your stomach that helps move food out of your stomach and into your intestines) and injecting it with botox to relax that muscle. I guess if it gets tight or spasms, that can cause nausea. What I forgot to ask if this is a one-time thing, or a recurrent procedure. It's only endoscopic, so at least they don't need to cut anything else! He also recommended some physical therapy to break up some of my scar tissue. After surgery, your body immediately starts building scar tissue. That makes it difficult for the stomach and other organs to move food through the intestinal tract. So, he recommended a physical therapist who will work to break up that scar tissue. Hopefully, less scar tissue = more stomach/intestinal movement = less nausea.   I had my first appointment yesterday, though it was really just a consult. I'll start going twice a week next week and see if that helps.

Dr. Khan also prescribed another (yes, another) med (sucralfate) that binds to anything like acid or bacteria and can help heal any irritation in the stomach or pylorus. Once it bonds to the acid/bacteria, it then moves everything out of the stomach. I've been on it for a few days now. It seems to help a little bit. The first day I took it, I didn't have any nausea/vomiting until noon that day, which is monumental for me! It hasn't been quite that good since, but at least I'm not waking up to lean over my bed into a puke bucket at night. It's sad what standards I find acceptable anymore. It reminds me of that first apartment you have in college. A run-down 300 sq ft apartment with your mom's 20 yr old couch and a 19" tv with rabbit ears that gets 3 channels was just fine, and you were perfectly happy with it at the time. Look back now - would you ever go back and willingly live in that condition? Not me, but oh how our standards change! So, how many of you thank God every day because you didn't have to barf in a trash can that day? I actually do. Sorry - self pity moment there. It gets wearing.

Drs. Khan and Dunn are ordering more bloodwork, as well as another CT. The CT will look for anything structural, like an abscess or a partial bowel obstruction. The bloodwork will look at the standard stuff as well as a more intensive nutritional workup.   Dr. Khan also wants to investigate a possible autoimmune response that is causing the joint pain and edema.  He said he would not be too concerned if it was just swelling in my knees and ankles, but that it indicates a bigger issue when it gets into the hands and fingers. He is going to refer me to a rheumatologist just to make sure I don't have anything going on there.

I'm so glad these doctors are willing to work together to figure out why I can't stop vomiting and what the story is with all this joint pain. They seem to be on the same page, and the next steps are the right things for me. It's a nice change of pace to feel like part of a team, and to have doctors committed to patient care. As you know, I can't say enough good things about Dr. Dunn. Not only is she a fantastic surgeon, but she (and the whole MN team) keep in frequent communication AFTER the surgery as well. They're just a world class bunch of folks, and I'm continuously reminded that I made the right choice going to UMN for my surgery.

This coming week is choc-full of appointments and tests. Monday I have Physical Therapy, Tuesday is bloodwork,  a CT scan, and an appointment with a possible new primary doc. Wednesday I'm seeing my pain doc, and Thursday is more PT. I hope I can survive the week!

I also wanted to thank everyone who joined me in celebration of the 8th anniversary of my 29th birthday.  :-) I'm sorry I only made it halfway through dinner, but it meant so much to me that you guys took time out of your busy lives to spend a couple hours with me. Love you all!

Forgot to add the photo! Nice, eh?

The downside of a midnight snack...

This is how I fall asleep most nights, though usually without my hand in a sandwich (though this was neither the first nor the last time I've zonked out while eating!) Lew always has to straighten my neck out. I'm guessing this is why I wake up with a sore neck every morning!  He also took video of me sawing logs. Hey, at least I'm sleeping soundly! I haven't done that in years! Decades, even!

Overall, I'm not feeling too hot lately. Same complaints, though my nausea seems to be getting much worse for some reason. I thought things were getting better with the increased pain meds, but sadly, that only worked for a few days.  :-(  I just have to take it one day at a time and remind myself that even my bad days now are better than my good days when I had a pancreas. It's just hard to remember as I'm curled up with my heating pad or can't sit at a table with friends because I feel like passing out. We'll figure it out, I know. It's just going to take longer than I want. This sure is an exercise in patience!