Saturday, March 9, 2019

Mountain Climbing

I think most of you know by now that I’m from Washington state, in a suburb of Seattle and Tacoma. I love it. I have never in my life wished to live any where else because it is truly my home and hopefully always will be! I love the big trees, the green in every direction you look, the glistening bodies of water that you can’t go too far without running into, the true four seasons and I even love the rain that makes it all possible! 

One of my other favorite things is the big mountains looming in every distance you see. We’re surrounded by mountain ranges and of course Mt. Rainier in all her majesty! When it’s a clear day and the sun is out there is nothing more beautiful than a blue sky hemmed with the white and blue peaks of the glorious mountains. We even have a saying in the Puget Sound area, “live like the mountain is out!” 

The thing about those mountains is they’re undoubtably massive and foreboding. I would never, from a distance or upclose, ponder whether I could climb them. (I acknowledge that some whackos do in fact climb these mountains and it is possible for them but I’m winded after a vigorous stair climb...) 

But the mountains here are so different! I’ve tried to capture them with my phone camera but it’s impossible to clearly see the details and proportions that simply make them... minimal. I look at those petite, smooth mountains bare but for some brush, rocks, and occasion cactus. It makes me think even I could climb to the top of that glorified hill! 

Then every time we drive closer to these “mountains” I realize it’s actually much bigger and so steep! You would have to be a skilled climber to summit these deceiving mountains! 

This trip has been a series of climbs in various terrains and elements. Literally not one things has been as it seemed it would be or what I expected. 

Yesterday morning I woke up at 5 am snuggled up with my sweet boy and realized I couldn’t say a true goodbye without waking him and making him sad to be leaving me all over again so I just petted his little face and said a quick prayer over him and got up and got dressed. We packed up our stuff and left leaving my sister and son there to pack up their stuff and head west towards home when they woke up. Our stay at that hotel was over but I had surgery to go to and a little recovery to endure so we needed to be closer to the hospital. 

I got to the hospital and checked in and was wearing a fancy gown and socks in no time! 

(This would be a good time to mention that while most of the doctors I’ve seen here have been incredibly disappointing all of the modern, high tech gadgets and ways of doing things were awesome and the campuses were all decked out and lovely!) 

They got me hooked up to an IV and I met with all the nurses and doctors and was treated wonderfully! No one knew exactly what was going to go on in surgery so we were all a little uncertain but confident. 

They wheeled me back to the OR for what my mom and I have guessed to be around my 40th time and they gave me the good stuff. The next thing I knew I was waking up in the recovery room in more pain than I can remember. Tears were streaming down my face before my eyes were even open... I was physically overwhelmed with the sensation of pain covering so many areas. I could barely decipher what pain was what and how to accurately describe it to the various nurses and doctors who were trying to help alleviate the pain. The nurse was practically pouring doses of morphine in my IV but the lowest the pain ever got was an 8. I was using words I never use except when the pain possesses me like this. (Just the other day I described a frustrating day as a “spit show” and my dear husband asked if that was the Little Rascal’s version? Ha!) 

Finally the surgeon showed up and I shrieked in between sobs “there’s glass in my stoma! Please take it out!” I could barely see my stoma because it was wrapped in a weird kind of Ostomy bag that I’ve never seen, it basically looked like a Tupperware stuck to my stomach. But I could see there was a red tube protruding from my stoma and black stitches holding it in place. It wasn’t glass but it felt just like a broken glass bottle was stuck in my stoma. The doctor kept asking me questions but the pain had overtaken my body and I couldn’t communicate any more than that. 

Finally he left and came back then told me he was going to use a local anesthetic and numb the whole area. Next thing I knew I quivering and sobbing as he injected the medication straight into the stoma and all around it. The nurse held my hands and I squeezed so tight... Not too much longer everything sort of started to ease up. He stayed with me until I said the pain was down to a 5 and he told me it was a good sign that the local worked because it meant it was pain from tube and the sutures sewn into my stoma and flesh and not some kind of obstruction. 

They graciously called my mom to come back in the recovery room and between her calming presence and the medication I fell asleep for a little bit longer. I woke up and the nurse started preparing me to leave! I started freaking out! What if the local wears off! I can’t deal with it! All I have is some piddly oral morphine! I need the anesthetic! She comforted me and said I should be okay and I could call the doctors on call if we needed anything... she even called our new hotel that was just a few minutes away and told them I was coming and they better have a room available. I don’t remember what she looked like or her name but surely she was actually an angel. 

Next I had the arduous and painful task of getting dressed. Every bend or tug sent pain rippling through my body but I made it through. I stayed connected to my drain bag and they wheeled me out to my mom waiting in the rental car. I am SO thankful we had the forethought to spend a little more for one night to get a nearby hotel because the drive was miserable but I was settled in the cozy, clean hotel bed and after my mom closed the curtains and I took medicine we were both asleep in no time. 

We woke up after a fitful nap and I needed more medicine so I quickly ate a banana and swigged it down. My mom picked up some Italian food and we ate in bed with hand towels as placemats and watched an old JLo movie on cable. Then we went back to sleep. (Sleep is truly gods gift to us humans, it’s the only real respite from life!)

This morning I woke up shaking from the pain but I could barely move without the tube moving and causing that pain to seemingly shred my stoma and my soul. Thankfully once the morphine was on board it was once again tolerable and my mom brought me breakfast from the buffet and I was even able to shower. 

Now I’m just laying in a towel in the hotel bed dreading having to put any form of clothes on that might even brush against this protruding tube... 

The real question I’m sure you’re wondering is... is it working? Well. I’m not entirely sure. The one thing I can tell is that instead of regular bursts of pee pouring out of my stoma it’s now just constantly dribbling out of the drain tube. So that does seem to be consistent with the concern that the pee pools in my conduit which makes it stretch and hurt. The conduit was never meant to hold any urine but simply be a byway to get from my kidneys into the bag. But there is still some urine occasionally sneaking out of my stoma next to the drain tube so the fact that my abdominal pain is still there doesn’t really mean anything since it seems that it could still be puddling or reacting to the urine itself which is another theory. Otherwise the pain and extreme sensitivity I have now with this tube sticking out is so distracting and it’s hard to say what pain is from the trauma of that whole process. Not to mention them sticking a scope all the way from my stoma to my ureters as well as inserting the tube up that far then sewing it in place. They said the inside of my conduit looks like a “cobblestone street” and just weird! They also took biopsies and hopefully those will give them information for their conference. 

We’re moving to another hotel... our 6th move since being in Arizona, that’s slightly further but also cheaper... (who knew lodging in Arizona during spring was SO expensive?! Our options were crack den infested with cockroaches or luxury resort. It was hard to find something in between... thankfully a friend who’s sister works for Marriott gave us a hook up!) Then I will keep watching for signs of improvement or worsening of symptoms and then await their call after the conference on Monday. If all goes well, they don’t have further consults or tests and the tube isn’t too miserable we will (fingers crossed) be flying home on Tuesday! 

I’m praying this drainage tube will give us some answers that we can take home with and chat about with my urology team at UW. As painful and difficult as this (hopefully) last portion of our climb has been I’m thankful to at least be getting more information and it makes it feel like this whole trip wasn’t a waste of energy trying to climb a mountain that is completely inhospitable. 


I’ve debated whether I should post these pictures but I think we’ve been through enough all together and you know it makes me feel better to share the pain hahahahaha! 


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