All Together

(Disclaimer... I didn’t bring my laptop so I wrote and edited this on my phone which was a little tricky! Please forgive any errors and the lack of finesse!)

Last spring my husband, son, mom and I all took a trip from the Seattle area down to sunny San Diego. It was an amazing week. In fact on New Year’s Eve we all decided that was our favorite part of 2018. While we were down there we went to the San Diego zoo, legoland and sea world. It was so much fun but we confirmed that my son Titus got his adventurous spirit from his momma. Meaning, he’s lacking one. Well that’s not true because he does love nature and animals so he isn’t completely devoid of adventurous desires but they’re minimal compared to other wishes. Specifically when it comes to rollercoasters he’s definitely inherently more Deni than Zach. Not a fan. My mom and Zach convinced us scaredy-cats to give a couple small, not super loopy ones a try. We survived but didn’t enjoy it. Towards the end of the day at sea world Zach was riding a brand new scary roller coaster and I saw a splash mountain style ride called Atlantis. It looked simple and easy. It just splashed down a little water filled track then went around a little circle. So I convinced Titus we should give it a try (I’m literally getting nauseous as I’m typing this). There was no line so we had no time to really stop and examine the situation, we all just hopped on. Right away we splashed down into the little pool and Titus whined a little bit but he laughed as random people tried to shoot water at us. Then the little car went around a corner and into a dark room. Then we started going up. In the pitch black. Titus started crying and I started apologizing. My mom, always the optimist, just kept saying “it’s okay! We’re all together!” I, always the pessimist, just kept thinking “at least we’ll all die together.” After what seemed like hours of going up it finally stopped then a door slid open and we were basically in the clouds, we were so high up. Then after a few seconds of the worst anticipation the little car plummeted to the earth spraying water all over us. I’m pretty sure Titus won’t trust me in regards to rides any time soon, if ever. 

I keep thinking about that moment. In the pitch back, fear and dread getting higher every moment we did. We had no idea what was coming and that part, the not knowing, was worse than anything else. I didn’t know how to comfort my son (or myself) because I didn’t know what to expect. I couldn’t tell him it was almost over because I wasn’t sure when it would be. Truthfully, looking back the fear when we were splashing down from the clouds was actually less than when we were making that dark, silent assent. 

That’s where we’ve been this last week. In that dark, dank elevator to the sky with no idea when we would stop or, most of all, how we would get back down. 

Similar to the ride I knew going into my time at the Mayo Clinic it would be hard and scary but it’s been so much worse than I expected in a lot of ways.

Last Monday my greatest fear was days of constant consultations, testing, and imaging but I had no idea that really what I should be fearing is stagnate inactivity. 

The doctor I saw was baffled and overwhelmed by me. He mulled some ideas over out loud but kept saying he thought I might just have to have my whole urostomy redone. He briefly mentioned a ureterostomy which would be just doing away with the conduit and making the ureters themselves into stomas but that would be massive surgery and then I would have two bags the rest of my life. (I emailed my surgeon asking about this and he said the team at UW had considered that as well but it’d be a last resort.) He said he would present my case to the other urologists but he wasn’t sure when they’d have their next conference and he wanted me to see GI and the allergy specialist (eosinophil cells are often an allergic response). 

He didn’t ask for a urine sample, examine me, or even check my reflexes. It felt like a complete waste of time. 

I went out to the scheduling desk feeling confused and discouraged but hopeful that the other doctors would have more ideas. Until the scheduler told me that it would be weeks until I could be seen by the other specialists. I explained that I was in Arizona from Washington and after some finagling I got the GI appointment scheduled for a week later and the allergy dr for two weeks later and then another urology one a few days after that. I was kind of a mess for a few hours. I really wanted to go home. I only had two weeks of care planned for my son and we only had our hotel room for a week. How was I suppose to just stay in Arizona for 3 weeks? 

After talking to my husband and mom I calmed down a bit and comforted myself with the plan to call the cancelation line 3 times a day until we got things moved up. 

The next day we went to a nearby mountain and despite my debilitating nausea we drove to the tippy top where surely the desert grinch lives and I prayed for God to move the mountains by way of my appointments. 

The day after that a different urologist called and asked me some more questions and asked for UW to send the actual images of some of the scans I’ve had. He reassured me that they’re thinking and talking about me so even though I’m not actively doing anything things are happening behind the scenes. 

The next day we finally struck gold and got my allergy appointment moved almost a full week up! We were also able to reserve our room for another two weeks. 

Meanwhile not knowing the plan or how long we’d be here was getting to all of us! My sweet 7 year old, my big, brave and articulate boy was calling me several times a day trying to choke back his tears and asking me when I was coming home. Finally after an especially gut wrenching bedtime call I was determined to get him down here some how. If I can’t go home to him then he has to come here to me. 

My sissy said she’d pack him up and drive down here then whenever we’re done we can all just go home together! We all have been feeling so much better since making a plan and knowing that we will be together before the end of this week. (All together, that is... except my hubby. In 10 years of marriage I don’t think we’ve ever been apart for more than a week and my cold feet and I miss him so much already!! I am so thankful for daily FaceTime sessions though!) 

On another note. Because of not knowing when the allergy appointment and potential testing would be I had to stop taking my beloved Benadryl which I take for nausea. So it has been an extra hard week with nausea on top of the pain. Other than that one trip to the mountain and a few meals out I’ve just been in bed trying to deal with the symptoms as best I can. Tomorrow I have my GI appointment and then Wednesday is the one with the allergy doctor then Titus and Jeny get here on Friday. Im praying that this week is fruitful and progressive but who knows really... It’s just like the fear on that ride, the unknown assent into the heavens but again... at least we’ll all be together.