The cactus and me, me and the cactus.

I wrote a blog several years ago around Mother’s Day comparing and contrasting my mom to the beautiful, humble daisy. Well I think I’ve found my spirit plant. The cactus. Yep. The big, prickly, green symbol of the southwest and I are like this 🤞🏼. 

First of all we both appear to have stopped caring about how we look around the same time the cowboys stopped starring. 😉 

Secondly, we both have strong defense systems. The cactus- sharp needles. Me- sharp whit. 

Third, we are intriguing but often times people are nervous about getting too close. 

Lastly, and most of all, we have been created perfectly by this magnificent creator to not just survive in temperament climates but to thrive in it. 

Did you know that despite their stature the roots of a cactus are actually quite shallow? It’s so that the minute it rains and even a speck of moisture permeates the dry ground those roots are right there to soak it up! 

My dear cacti friends and I differ in this because I take pride in my deep roots. My roots in my faith and my roots in my family. Those suckers are nearly touching the center of the earth. 

However I find that fascinating that these intimidating trees have dainty roots that are just bellow the surface. 

Also the spines on a cactus are actually the beginning of leaves or flowers but in its habitat it rarely has the chance to flourish. But that cactus WORKS it! Like, oh I didn’t want flowers anyway. Little piddly pansies can flower but they’re a dime a dozen. Dare I say they’re... pedestrian? (My husband loves when I use that phrase. Ha. Psyche. (Why did we stop saying psyche? Let’s bring it back!) He hates it.) 

So instead of being a bulbous plant covered in flowers and leaves it is known for its prickly pricks. Maybe we don’t even miss the adornments because we’ve just accepted and embraces the cactus for what it is. What’s important to note however is that the cactus doesn’t give up, it continues to grow those spikes as potential leaves or flowers even though year after year nothing comes of it. Of course there are times that a determined cactus preservers and sure enough produces a bud! Oh the pride it must feel! I bet it straightens up and holds its arms extra high surely praising God for his perfect plans and thanking him for rewarding it’s faith and endurance with the blessing of a bloom. 

I perhaps am letting this metaphor get away from me... oh boy. That happens. Unfortunately I’m writing this on my phone and I don’t have the knowledge or gumption to thoroughly edit or revise this blog so just pretend like we’re talking in real life and enjoy the (jack)rabbit trails. 

Sometimes I wonder if I’m like the cactus and as much as I want my sharp needles to turn to flowers they’re just not going to. I literally flew thousands of miles to another time zone, to another climate with the hopes of answers and subsequent treatments and healing but every day the answer is no. They don’t know. These supposedly genius doctors, renowned specialists they try to mumble words of this or that but at the end of every appointment they remind me how uncommon and rare I am. They study my records and results, they ask their questions, they think out loud. Then they tell me they’ll talk my case over with their colleagues, they refer me to more renowned geniuses, and send me on my way. It has varied a little bit from doctor to doctor but that’s the gist. 

Then I go back to the hotel and I cry. 

 Not only does no one know what’s wrong with me, they don’t know why it’s happening nor how to fix it. 

After every single appointment I’ve boldly declared that I was done and going home. I don’t know if that was the right thing to do or not but so far I’ve been convinced to stay. Today I proclaimed that unless things started really shaking, I am leaving on next Friday no matter what. I haven’t seen one reason to stay here, seeing specialists that keep complementing the thoroughness of my doctors back home! The different specialists aren’t communicating as a team, the appointments aren’t on the express track, and most of all they don’t know why my body is constantly throwing a fit and rejecting my urine no matter what equipment it goes through. The doctor I saw today referred me to see a nephrologist (which I’ve been requesting for literally a year) but they can’t get me in for 3 weeks! We’re going to continue to call the cancelation line and we will pray. Hopefully God will move the appointments like he did last week but if not I don’t see any reason the one down here would be any better than one at UW. 

Oh man. I’m really rambling now. I apologize. 

To summarize. I’m a cactus. God gave us these incredible abilities to adapt to our arid conditions but he also gave us this insatiable drive to do more than just survive but also to thrive! 

For my less metaphorical readers here’s the facts... so far they haven’t come up with any answers. They did a bunch of blood and urine tests today (finally) and I have a skin allergy test tomorrow. Then I’m done. I might get a follow up with the allergy doctor to go over all the results but he may just call. The urologist is going to present my case to the other urologists on Monday (finally) and they may come up with some tests to do or more specialists to see. I’ll wait a few more days to see if the nephrology appointment gets moved up or there’s anything else they need from me but like I said, things would seriously need to get shaking to keep me here past next week. That will be three entire weeks here, mainly just waiting. 

The good news is, in the meantime, my sweet baby boy is on his way down here and I can’t wait to snuggle him until he tells me I’m annoying him and then just like 5 more minute. 

The pain and nausea have been out of control the whole time I’ve been down here. My urine has continued to turn all the colors of an Arizonan sunset. I’ve just been laying in the hotel bed the entire trip. We drove to the top of a little nearby mountain, we went to target and have gone out to eat a couple times but otherwise I’ve been in the room the entire time. I’m praying my Mommy creature power will kick in and I’ll be up to going to the pool at least once or twice while Titus is here but I’m trying not to set too high expectations on myself. 

Thanks for reading my rambling thoughts and supporting my family and I through all of this!! We are always and forever so thankful. 

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. 

On a jet plane

16 hours until the plane takes off. That’s right. I’m leaving on a jet plane, I (literally) don’t know when I’ll be back again... oh how I wish I could jauntily belt out that song with a little shimmy added for flare. I’m too paralyzed with fear, guilt, shame, and complete loss of control! Who’s idea was this?! I’m going to sue for mental and emotional anguish and trauma. 

Who can afford legal fees these days though? I guess I’ll just write a blog. 

In mere hours I’m leaving the lacy edges of a slushy winter in the Seattle area and going to the dry and yet surprisingly cool faux winter in Phoenix. I’m trading in pine trees for palm trees, Dick’s Burger for In-N-Out, my beloved bedroom with my well loved king size bed always peppered with crumbs for a one bedroom suite at a golf resort, and most importantly my team of drs for a fresh batch of specialists at the Mayo Clinic.

After I was discharged from the hospital in December still in as much misery as I was when I went in and no end in sight I called the Mayo Clinic in desperation and sure enough they accepted my case! After my dear friends and family (and even a loyal blog reader, shout out to her!) raised almost 6,000 dollars and all the planning the time has finally come to head down there. On Monday morning I have an appointment with a urologist who will devise a plan of consults and tests then hopefully they will crack the case and finally figure out what’s wrong with this jalopy of a body of mine! I won’t know until after things get started how long I will be down there... they said to plan an “open ended trip” so I currently do not even have a flight back home booked. 

It’s insane! Who gets a one way ticket to another state?! Seriously... oh boy. That’s it.  I’m not going. Just kidding. Kind of. I mean I am. I just really don’t want to. I feel that same nervous energy I feel the night before a big surgery. Dread and hope mixed together makes a punchy cocktail best served in a pink plastic jug with ice chips. 

On one hand I want to get it over with because I’m hopeful for a good outcome but on the other I just don’t want to go through the process to get there. 

First of all, It’s unnatural to ask a mother to part from her brand new baby for more than a day. I know what you’re thinking... you agree. Also you might have reread that a second time and wondered when I had a brand new baby... well he’s 7... but in the big scheme of things he’s pretty fresh! If he was a dog he’d just be 1 tiny year old. So. Basically. He’s an infant. He needs me! I can’t leave him! He’s actually sleeping next to me right now, probably more for me than for him. I need to be able to glance over at him any second I want to because tomorrow I won’t be able to. I need to feel his steady inhale and exhale that reminds me how fragile this life is. I need to study his face and make sure there isn’t a feature I haven’t noticed before or I dare to forget. 

I’ve planned two weeks of care for him because I cannot live without him for longer than that so if I’m still down there by then my sister or husband will bring him to me for a visit. He’s going to be so busy doing fun things with family that he’s barely going to miss my mom and me... that’s actually a complete load of hooey. He’s going to cry. Regularly. He’s never been away from both of us for more than a couple days. I can organize, make lists, and plan fun things for him all I want but he’s going to have times where he just wants us home. I got him a little stuffed puppy that has a little speaker dealy on the inside that my mom and I recorded into and every morning he has a note and little prize to open. I hope those things help. 

If I tell myself I’m doing this for him, to give him a chance to have a healthy mom, the guilt eases up temporarily but then I loose focus and get drowned by the guilt. 

Right now my head is somehow above water but I can’t guarantee that tomorrow I’m not going to sink to the depths of all the negative feelings trying to pull me under. 

If I knew for sure that they were going to not only know what’s wrong with my body but know how to fix it I would surely be skipping up the jetway as if I was starring in a musical version of How IC It but the fear of them not knowing what or how is breathtaking. 

So I’ll go but I can’t sing and I can’t dance while I’m doing it. 

I really want to document this journey so I think I will post blogs throughout. If you think of me I would so appreciate prayers for all the fears and anxiety leading up to the first visit, for clarity and wisdom for the doctors, for easy and obvious solutions, for Titus and Zach to hang in there back home...

I can easily say I would never have been able to do all of this without the support of my incredible friends and family so thank you so very much! I have been looking for the right word and the one that keeps coming up is valued. I feel so very valued by all of you! It reminds me that not just my life but my quality of life is worth investing in. Thank you all so much for the emotional, physical and financial support. It truly means everything to us!