Cold case...

I got the call today... the one I’ve been looking forward to and dreading at the very same time. The one from the doctor where he says I should go home. Yay for home and all the comfort it brings! I’m trying to focus on that... because if I start thinking about 3 entire weeks here and leaving with more pain, no new diagnosis and no more treatment options I get a little overwhelmed. 

Sadly that is the case though... I consulted with a urologist, gastroenterologist, allergy specialist, nephrologist, and a urology surgeon. Then today the whole urology team got together and talked about my case. The only consensus is that no one knows why my body is doing what it’s doing or how to help me. Their final suggestion is to meet with a rheumatologist but the one here doesn’t have availability for months so I made an appointment with one at UW on May 1. 

Other than that they claim they will keep chatting about “my case” but I know that without me here, continuing to have appointments and tests results coming in they will forget all about me and my case will go unsolved by this particular team of doctors. Maybe there will be a Netflix documentary that’s like those cold crime case shows except they find medical cases that are never solved and then a batch of even smarter, even more adventurous doctors will pick up my case and decide they want to be the ones to solve it! But I hope I don’t have to wait too long to find out... 

I scheduled a follow up appointment with an award winning nephrologist at home for next Monday and then I’ll see a nurse on that Friday to remove this blaspheming tube. Then I have a follow up with my urologist on April 1st to go over everything and see if he has any further ideas or thoughts now that we have ruled so many things out. 

That is actually a good way to look at these last 3 weeks, a process of elimination. We now know what it isn’t. It isn’t a food allergy, medication allergy, tuberculosis, parasites, anything GI related, malignant eosinophilia, autoimmune eosinophilia, mast cell disease, no cardiac involvement, or any other typical cause of eosinophil cells. My conduit appears to be draining fine and isn’t obstructed as is the case for my kidneys. We also know my ileal conduit doesn’t look right and isn’t functioning correctly and is full of cells that are trying to tell us something... 

All the doctors are overwhelmed and just out of ideas... In an email I got from the allergy doctor he wrote a similar long list of “what it’s nots” then said, “I haven't come across any mention of eosinophilia of an ileal conduit as yet but am continuing to review the literature and once done with that will probably also ask some colleagues, but most have never seen a case of eosinophilic cystitis let alone eosinophilia of the ileal conduit.”

Great. 

As of now all our focus is on the tube poking out of me like a stick out of the wrong side of a s’more. I’m trying to keep a journal of when the pain comes to identify what’s bringing it on or not. Hopefully the next 10 days with this tube will give us some information. 

If I can make it that long with the tube in...  I’ve had some complications that are so gross that I will spare you... Considering I posted pictures of the tube sticking out of me like a proud voyagers flag on top of a mountain you can only imagine how gross it is. I will tell you that the tube has tried to make a break for it and when I told the surgeon that he said he wasn’t surprised because of my “robust” conduit. I am now striking that word from my vocabulary, especially when describing fine cheese. 

So. Although I can barely sit without pain that makes me tremble, my mom and I are boarding a plane tomorrow afternoon headed for home! 

Thank you all so much (again) for doing this journey. I wouldn’t blame you one bit if you yanked off your Team Deni jersey and quit the team after this leg of the journey went so differently than we hoped... but I get the feeling you’re in for the long haul and my overly exhausted and pain contorted nerves is overwhelmed by that. Thank you. 

Also I want to publicly thank my mom for doing this entire trip by my side- experimenting with all sorts of take out food and movies on cable, taking me to every appointment and test, then overviewing them for hours with me, watching me cry while she tries not to, packing and repacking for our 6 moves, and literally getting me anything I wanted or needed. 

I’m so thankful for my sweet hubby too! I haven’t spent this much time away from him in almost 12 years and I haven’t liked it at all! I’m blessed to have such an amazing partner in this life who has been working, holding down the home base and feeding the 6 pets... (Titus loves to tell people “I have 6 pets that he uses for siblings which means my mom and dad have 7 kids...”) 

Of course I’d also like to thank my dear friends who set up the go fund me. I never would have guessed we would have been here for over 3 weeks and therefore it’s been way more expensive than I planned and we’d be living under a palm tree if it weren’t for their thoughtfulness and so many peoples generosity! 

Okay this is seriously sounding like a acceptance speech but just a couple more... Also thanks to my dear friend Melissa who has patiently asked for updates and encouraged me every day and graciously wouldn’t let up when I thought I didn’t want to talk about things.

Also my Grandparents, Aunts, Uncle, Siblings, and Cousins who have been with me on this ride since I was 13 and are just as committed to praying and checking on me as they were at the beginning! 

As the stars on stage actually accepting awards panic about... I’m sure I’m forgetting someone specifically but just know that every prayer said, comment posted, or text sent has meant so very much to me!!