Terrified.

If this was decades ago I would have crumbled up pieces of typewriter paper in and around a trash can nearby. I have started, rewritten, and completed this blog so many times but it’s never right. So I do the 21^st century version of angrily crumpling papers and chucking it towards the trash, I start a new document. White screen, blinking line that always intimidates me all ready and waiting for my fingers to tell you all what’s going on in my head and heart.

The problem is… I don’t even know what that is.

Two months ago I was forced to make a huge decision. Continue fighting interstitial cystitis, the horrible disease that has robbed me of so much over the last (almost) 15 years or give in to it by getting my bladder and urethra removed.

It took a lot, actually it took everything I had, to make the decision. I talked about it over and over with everyone I knew (some that I had met minutes before I laid this decision on them), I thought about it constantly, I made lists, I talked to multiple doctors and specialists, and I constantly prayed for guidance.

Finally I made the decision. After a grueling, miserable season of life that I hope one day will be a foggy memory I decided that I had to have this surgery. For the chance to live my life, I had no other choice.

So I wrote the blog entitled, New Beginnings and I declared to all, that I chose to move forward with the decision to have this life changing surgery.

At that time I was fragile and vulnerable, I put it all out there but I wasn’t sure what response or support I was going to get from my family, my friends, and my fellow IC sufferers. I wrote that blog in the way that I did for all of them but really it was mainly for me. I HAD to be positive. I had to think of the surgery as this huge opportunity to get a life that I never dared to dream was possible for me.
 

Since then that blog has climbed up to my #2 most read blog and continues to be read daily. I have received nothing but support from everyone, not one single person had a negative thing to say. I am blown away and so thankful for all the compassion and kindness my dear readers showed me.

But I have a slight problem… I’m not sure I was 100% accurate in that blog, accurate might be the wrong word… I was telling the truth and I do hope all those things come true but I definitely glazed over some of the hard sides of this surgery… Again, I think that was more for me than anyone else.

As I went through the motions that followed my decision to go forward with the surgery I kept everything light and positive, I went into each appointment with hope and anticipation. When I talked to people I excitably explained the surgery and told anyone who would listen about my “well list” that my husband and I have started that is full of all the things I/ we want to do after I’m recovered from surgery and when I’m healthy and pain free. I also proudly announced each day how many days were left until the big day while crossing days off the calendar as a nightly ceremony.

I did so well at being positive that I think I actually fooled myself. All along I knew that there were lots of risks that went along with the surgery and as I made this decision I considered all the risks as just that. One word. “Risks”. That was on the con side of my pro/con list. I didn’t even go into detail with myself, I just lumped up all the horrible things that could go wrong in one tiny word. So of course when I listed all the millions of potential pro’s, that one little word didn’t stand a chance of making a difference in my decision. I covered that one little word up with dozens of outings and feats that I could never do with my diseased bladder.  

Then last week I had my pre-op appointments. The whole thing was big… The city, the parking garage, the hospital, the waiting room, the exam rooms, the blood lab. It was kind of a wake up call.

Before my appointment I sat in the waiting room surrounded by bald cancer patients in soft, ill fitting beanies. One guy had wires coming out of his skull. Their loved ones surrounded them like determined guards around a fortress. The patients themselves just looked drained and like they only had a few drips of life left in them.

I wondered what I was doing in a room, even in a building, with these poor sick people. After all, I’m just a healthy young woman with a bad bladder, I’m not fighting for my life. Or at least that’s what I made myself think.

My appointments went well and left me with had a big blue permanent marker dot just about 2 inches to the right of my belly button where my stoma will be. Then I went to the lab and I spelled my name and told my birth date 6 times to 3 different people who crossed checked it to the stickers on the vials, my wrist band, and my chart before they drew my blood. Then they did that exact thing all over again and drew more blood from my other arm. This was all to verify that they were 100% sure that they knew my correct blood type.

They also gave me papers to fill out in order to make someone my power of attorney, a living will, and make a decision about the whole DNR (do not resuscitate) thing.

I was exhausted after all this and collapsed in bed when we finally got home but I had an uneasiness that I only get when something uncomfortable is trying to come out that I have forcefully shoved down where I wouldn’t have to think about it.  

For a few days after that I kept my mind busy making lists and planning as many minuscule details as I could from the comfort of my bed but then finally all my lists were made and as time went by and with my wonderful family’s help, we crossed everything off my absurd lists. (Everything except get Titus a sprinkler. I have this irrational fear that it’s going to suddenly be 100 degrees while I’m in the hospital and he won’t have a sprinkler to play in. Yes I realize he can just play in the hose or even an old school garden sprinkler like I played in, I also realize we live in the suburbs of Seattle which is not exactly known for its tropical weather and last but not least I also realize that my parents, my husband, and whoever else is caring for Titus while I’m in the hospital will regulate his temperature in a fun way and can even go and buy a festive sprinkler on their own. But, I still want to get my kid a dang sprinkler if you don’t mind.)

The X’s on my calendar grew closer to my circled surgery day and finally I couldn’t suppress any of it any more.

The box that I had shoved all my fears and all the possible complications and risks into popped like a giant Jack in the Box. Suddenly I was terrified.

I was so busy making others and myself accept that I am going through with this surgery that I think I was minimizing it and not acknowledging the hugeness of it and suddenly my body was flooded with dread and fear.

I KNOW that my bladder has stopped functioning and never will on its own again. I KNOW that the pain caused by my bladder is debilitating and robbing me of everything resembling a life. I KNOW that I cannot live with any form of catheter for much longer. I KNOW that I have tried everything out there to treat my IC. I KNOW I have spent the last 6 months in bed 90% of the time. I KNOW that I cannot continue getting infections. I KNOW I vomit regularly from the pain and medications. I KNOW that I passed out the other day from all of this. I KNOW I haven’t been able to be home alone with my son in almost a year. 

I know all that. I know I’m sick, very sick. Yet I just feel like Deni. Not Deni, the girl with IC or Deni, the sick girl. Just Deni. Obnoxiously cheerful, slightly air headed at times, fun loving, goofy, sarcastic, family oriented, afraid of birds, worm and bug loving, attention seeking, sweet natured girl.

So it’s very confusing to me that I would be going through something next to people who are fighting for their lives…

The last time I saw him my surgeon said to me “technically this isn’t life or death for you but this surgery could save your life.” I thought that was a nice sentiment at the time but since the weight of this surgery finally hit me that has been a helpful reminder. IC isn’t fatal. I won’t die from it. But what kind of life am I living with it?

I get all that. I know all the good, positive reasons to have this surgery… Just read my blog New Beginning, it’s chock (or is it chalk, I really don’t know) full of great reasons to go through with it!  

Yet… I am still utterly terrified. This is my 30^th surgery and I never get scared anymore, I think of them as annoyances like a trip to the DMV but this time is so different for some reason.

I have written in my blogs before about my need to belittle my disease and I have been catching myself doing that with this surgery as well. When I do so to anyone, or even myself, I have started listing in my head the things that are going to happen in this surgery… They will make multiple incisions for the surgeon operated robot to access my innards, they will remove my bladder and urethra, pull the illeal section of my small intestines out of my body then chop about a foot of that out then sew it back together, they will put that small piece of intestines in a different spot and hook my ureters up to it, then pull that other end of that out of a hole in my abdomen, fold it down like a turtleneck and stitch that in place to create the stoma, run a stint from my kidneys and out that stoma to make sure the urine can drain no matter any swelling, stitch up where my the urethra used to be, tuck everything back, and close all the incisions leaving it as close to how God designed me as they can after the modifications.

I may be even leaving some things out but those are the major things… Those are the things that make me remember that this isn’t removing my tonsils. This is removing an important organ and reconstructing bits of me to do things that they were never meant to do. This is going to hurt. This is serious. This is big.

I know that worrying does nothing, in fact multiple times in the Bible we are reminded to not worry. I KNOW that. I can’t help it though… All I have left to do is sit here and worry…

Worry about each incision they are going to make, each step of the surgery, what could go wrong, how long I’ll be in the hospital, Titus’ care while I’m there, missing Titus, Titus missing me, having uncontrolled nausea and vomiting, missing the premier of the Bachelorette, spending my birthday (2 days after surgery) in the hospital, the cost of parking for my visitors at the hospital, Titus not having a sprinkler… and so on and so on.

My mind is like a tiny windmill blowing constantly. (Unfortunately it’s not always blowing the smartest things… Frequently quite dumb things are blown out! (PLEASE tell me I’m not the only one that gets confused my South America and the “South” that’s IN America?))

So I realized that I am sitting here scared and worried, not just going on an emotional roller coaster but the whole emotional fair (there’s the emotional fun house, the emotional cotton candy, the emotion farris wheel…) and yet when I posted my blog declaring that I was going to have this surgery I mainly only talked about the good! I glorified it and put all my hope, all my life, in this one surgery.

Since then I have adjusted and accepted things a bit more and I can talk about the negativities without having a mental break down, sort of… But I realized I still hadn’t clarified the risks, the magnitude and the life changing part of the surgery to my readers.

So I think I should clarify a few things.  

First of all let me just say, this is by no means a “cure” for IC. Technically I won’t have a bladder or urethra so therefore a lot of the pain and symptoms that IC gives will be gone but as those of us with IC know, it extends itself beyond the walls of the bladder and urethra. I may still have nerve pain, pelvic floor dysfunction and pain, and I may even have phantom pain just like an amputee sometimes has. I also may still have muscle pain and weakness and other issues that come from my body feeling like it needs to protect itself from the pain for the last 15 years.

Also, after consulting with my doctor I decided to go the path of the “Illeal Conduit” or “Urostomy”. So it’s not like after I recover from surgery I will be a normal person who can just pee without pain. I will have a piece of intestines outside of my body.Then I will have adhesive around my stoma 24/7 for the rest of my life that a bag will clip onto. Then the bag will hang from my low abdomen and fill with pee as quickly as my kidneys makes it. I will have to empty the bag every 1 to 2 hours depending on how much fluid I’m drinking. I have to change my bag every 3 days. I have to make sure that nothing is leaking and that the skin around my stoma is staying dry and clean. I have to be very careful lifting for fear of a hernia around the stoma area. I have to drink tons of water so that my kidneys have an easy time (which is the opposite of what I've done the last 15 years with my "less drink, less tink" theory). So on and so on… Plus there’s probably several more ways this will impact the rest of my life that I don’t even know yet.

However I will say… From what I have heard so far the hardest part is going to be the whole lifting thing. Don’t get me wrong… I’m not exactly at the gym bench pressing but it’s the little things that I used to take for granted  that will be the hardest I’m sure… For the first month after surgery I can’t even lift a gallon of milk, then for the duration of my recovery I can lift up to 10lbs or so, after I am pretty much recovered I can only lift around 20lbs or whatever I can lift without straining. So that means after this surgery… I will most likely never be able to pick up my child ever again.

Let me just say that again.

I have 3 days, 22 hours, 40 minutes and 41 seconds of lifting my child left then potentially never again. Not when he gets an owie, not after his first Christmas program, not when he’s scared, not when he’s tired, not to get him in or out of the car. Never. I can sit on the floor or in a chair and have him climb into my lap or he can lie beside me but I can’t pick him up. Ever again.

I’m sure I’ll hear 1,000 more rules and limitations but so far that’s the one that burns down deep where only things involving your child burns.

So things like that and any other unknown ways I will be limited the rest of my life scare me so much. I have no control, I just have to see how things go then I have to listen to all the rules they tell me in order to heal the best I can.

Then there’s all the risks… Oi. The risks. Even though I’m doing much better at accepting how serious this surgery is I still don’t like to think about this part but you know me… I’m here to share. The doctor said that the risk of complications is like 50% with this particular surgery. Things like infections, imbalances from the urine going through the intestines, issues with the urostomy equimpment including leaking and skin irritation, bowel changes and issues, kidney problems, troubles with the stoma, and so much more… Maybe I’m just saying this to make myself feel better but every surgery has risks and considering I’m so young and healthy in the ways that matter I’m sure everything will go just fine! Yeah! Just fine! 

Aside from all that I am terrified of the pain. I have dealt with high levels of pain constantly for almost 15 years but all that stuff… The taking out, reconstructing, sewing up, patching back up… That scares me. That sounds real painful. I have had 29 surgeries before this one and I have never been scared like I am now… And I still have a few more days left...

I’m not really scared of the actual surgery… It’s more everything that will happen after waking up. Or potentially not waking up. Well, I’m not really worried about that but I will say signing a paper that authorizes my husband to make any medical decisions for me if I am unable (you read it here…. I DO want to be resuscitated and I want him to think long and hard before any plugs are pulled. (Joking… ha ha ha, just trying to lighten things up…)) and, as I mentioned earlier, all the verifying my blood type so they have the correct kind on hand just in case makes this all pretty heavy.

This is big time.

This isn’t a little in and out, doctor don’t waste your time tying the back of your mask kind of surgery. This is 5-6 hours of me lying on a flat table full of drugs to keep me in a perfect balance of deep asleep yet alive, with inside bits outside and outside things inside, removing, reconstructing, surrounded by qualified medical staff chatting about their good golf games while holding a piece of my innards in their hands.

Some of them might not even know my name, or that I’m a wife to a guy that really likes me in yoga pants, a Mom to a boy that can’t sit next to me without touching me, a daughter to parents that would still be proud of an out of the lines colored picture, or sister to siblings that think I’m hilarious,  an aunt to nieces and nephews that think I’m cool even if they’re too cool to admit it, an IC sufferers that shares her journey which others admire for her bravery and vulnerability, and so on…  

I’m bringing a big bag of candy for all the surgery staff,  I’m going to introduce myself to as many of them as I can before I’m fast asleep, I’m going to try to make them see me as a person… A healthy, vibrant, durable person that is just desperate for her life.

So yeah. I’m scared. I don’t really want to talk about it anymore. I have made my decision and I have no regrets but you guys… I’m so scared! 

That’s all I can really say right now because my computer screen is suddenly really blurry. Oh wait. That’s my tears in my eyes.

I am having this surgery because I have literally exhausted every other IC treatment, I have very little quality of life from my totally dysfunctional bladder and all the pain, and I am just desperate for some form of a normal life.

It’s a case by case thing and I’m sure each doctor is different just like each patient is. I’ve heard of some IC patients having great success and going on to live a normal life after this surgery and I’ve heard of people who have struggled after surgery as well. This is the furthest thing from the ideal solution to IC and not an easy fix whatsoever.

I promise I will continue to document my journey as honestly and as frequently as I can. I’m not here to promote cystectomy’s for IC, in fact if there was any way I could NOT do this surgery I wouldn’t even consider it. February of last year my husband actually brought this up to me and I waved him away like a pesky fly. It wasn’t until my bladder had fully stopped functioning and the pain was unbearable without narcotics that I even started considering this and even that was after my doctor brought it up to me.

I know that those of you who are in the trenches, fighting your IC war might think this sounds ideal but trust me… It’s not. There are so many things out there that are better than this. Things that won’t require you to go through all that I am about to in the surgery and then for the rest of my life… Please don’t give up!!

As for my family and friends who are in my fox hole with me right now, fighting my IC war with me. Thank you. I couldn’t do this without you. Thanks for letting me tell myself this will be awesome when I need to and letting me freak out about the magnitude of this when I need to. Thanks for all the help with Titus and the delicious meals for my family while I’m recovering for the next few months. Most of all, thank you for loving me in my imperfect, brokenness and for praying for me daily. I guarantee I couldn’t do this without you.

Especially thanks to my amazing husband and my parents who aren't just with me but they bear my burden with me. Also thanks to a special new friend, you know who you are, for always being there for me in the ways that count by just letting me vent when I need but then telling me to shut up and accept that this is huge. 

I will have my husband post updates on my facebook after surgery from time to time and I will try to write as soon as I can but please whisper a quick prayer or just say my name any time you think of me. God knows our plea and how much we long for this to work and he told us to ask so here we are... Asking him to use this surgery to answer the prayers we have all been praying for 15 years. 

(One more thing... I am battling yet another bladder infection and so far the antibiotics having been working the way they should be and I NEED this infection under control by Monday but I would really love for it to be gone sooner so I can enjoy some time with my family before this huge journey begins! So if you'd like to pray for something specific right now that would be it! Pray for the antibiotics to work quickly and for the infection to not even start reaching my kidneys!)

My boy and me on Mother's Day! I'm soaking him up, in all his filty, sweaty, sticky, sweet toddler boy glory!