Posts tagged mayo

Minnesota: the final chapter

Now isn’t THAT a dramatic title?

But it is true. We’re outta here today! It’s the last trip to Minnesota and I cannot wait. Well, I take that back. I’m not looking forward to leaving Jude, or dealing with post-surgery discomfort. But. I am SO glad that in just a few more days, I can bid farewell to my delightful (constant) companion, the ileostomy. See these leftover supplies that have taken up residence in the powder bath? I’m not gonna need ’em anymore! Woo hoo!
See ya, ostomy supplies!

In all honesty, after I got past the first 3 or 4 weeks, having the ostomy was okay. It wasn’t great, and there were definitely days when I was really sad about it all, but if I had to do it forever, I could. I could do it.

More than anything, I can’t begin to tell you how great I feel.  I haven’t had this much energy in years, probably in our entire marriage (5 years this summer!). That, my friends, is amazing. And to not be on steroids anymore? A miracle! Every day, I still have this automatic reflex, like, oh, did I take my medicine this morning? And then I laugh to myself. It’s all over.

I got a photo in the mail just after my first surgery. It was of us, at Thanksgiving, the week before my surgery. When I look at that girl in the picture, I think to myself that I just don’t think that looks like me. My poor body had been through too much. Oh, and we’re posing with Spiderman – isn’t that hilarious? (brief side story: We had gone to hang out with Simon’s sister’s in-laws on Thanksgiving Day. They have this lifesize Spiderman that they won in a contest, and they have any guest who comes to the house pose with Spiderman, and they make 2 copies of the picture: one for the guest to take home, and the other to put in a giant binder of every Spiderman photo they have. Isn’t that awesome?)
At Thanksgiving. One week before surgery #1.

So now, for my own personal comparison, this is me the week before surgery #2.
R. One week before surgery #2
and
Photo on 2010-02-17 at 14.03

YAY.  I’m just so much HAPPIER now. And at the same token, I remember talking to Simon in the first weeks after Surgery #1. I was crying because I was feeling really unsure, really doubting whether or not I’d made the right decision. Those first few weeks after were hard. I was sobbing, “I just want to talk to Future Me to know that everything is going to work out!!!”  He grabbed me and hugged me tight. “You do get to decide what Future Me tells you, you know,” he said in my ear. “You get to decide how this is all going to play out, how you’re going to respond, react.”

Hmm. I remember sitting up, sniffling. You know, I think he’s right. And now, if I could go back and talk to Post-Surgery-Me, I’d say, “You know what, you CAN DO THIS. And you will come through with flying colors.”

I reminded S of this conversation the other day, and he has absolutely no memory of it. But I wanted him to know that I heard what he said, and I know he was right.

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I’m Home!

Apologies in advance for how long this is.

I have never in my life been so glad to be home. Ever. It was as good and smooth a trip as it could’ve been, but man. There is truly no place like home.

First of all, I’d like to say how much everybody’s comments, prayers, notes on Facebook, emails, letters, you-name-it, have meant to my ENTIRE family. No really – you have NO idea. The power of prayer and encouragement is HUGE. I have been greatly encouraged, and I know it’s because as the Bible says, we were surrounded by “so great a cloud of witnesses.”

Let’s see, where did we leave off in this great tale of The Great Colonic Purge of ’09? If you’re a Twitter follower, some of this might be old hat, but I want to document this for myself and any other family members who might be reading. Don’t worry – I’m not one of those people who needs to post gory photos of the aftermath. I like pretty — and trust me, none of this is exactly pretty. So who wants to look at that?  ::shudders:: not me!

My surgery was on Wednesday, December 2nd. The day before we were scheduled to meet with the surgeon. I was in a pretty dark, stormy moody for those few days ahead of time. I think I was pretty mean to everyone, Simon and my parents. My anxiety level was pretty high and frankly, I just didn’t want to be there. We got to see the Aunt Cheryl lady from last time, and that was really nice. She’s so calming. Everyone there is, come to think of it. She put us at ease and was so kind. Our meeting with the surgeon was fine, if a little … cool? Well, maybe just not super personable. And then we met with the WOC nurse (wound/ostomy care) whose name was Lisa. Praise Jesus for Lisa – she was AMAZING. But that’s when I really lost it. She was showing me all the pieces to my ostomy appliance, and marking my belly for surgery with a Sharpie, and I just started sobbing like a baby.

“I don’t think I can do this. I just really don’t think I can,” I said.

“I know,” Lisa soothed. “Nobody does. But the fact is, you CAN do it. I see teenagers — cheerleaders and wrestlers — that do this every day permamently. But for you, it’s only temporary. Nobody likes it at first. YOu have to give yourself the right to cry, scream, and get out all those feelings. And then you’re going to be okay.”

So I sobbed it all out right there, and then it really was okay. We could move on with the presentation. As we walked out, we were all pretty somber. Mom was crying  a lot, and I was just really angry. I told Dad that if there was ever a time in my life that I wanted a stiff drink, it was now.  Now, if you know my family at all, we are not the drinking kind. Ever. So you KNOW that I was feeling a little rough around the edges! I can totally see (although not condone) why people want to use drugs or alcohol to deal with ugly feelings. Sometimes they suck. THey’re ugly, they don’t feel good. This was one of those times. We were ALL fearful.

That night, I had to do a delightful bowel prep, much like preparing for a colonoscopy. We watched a silly movie to get our minds off things, had another terrible cry, and then went to bed. At 8:30 the next morning, we reported for duty. I was taken into a room, given the typical gown and ugly socks, and we just sat there and waited for them to take me to pre-op.

Finally a nurse came with a gurney around 10:30, and wheeled me back to pre-op. I said goodbye to everyone and went to sit with all the other surgery candidates. I really didn’t like the idea of being alone already. But this is where I feel really strongly about the power of prayer. Because I know that we had SO many people praying for us, my fear began to melt. I was calmer than I have ever been, maybe ever in my life. The Bible talks about how Jesus can give us a peace that passes all understanding, and I am here to tell you today that it is real. I can hardly sit here and type this without feeling emotional about it. I have no doubt – no doubt at all – that Jesus was right there next to me in that little curtained nook, comforting me, calming me, and giving me the peace that He promised to His people. Jesus keeps his promises; He is faithful, especially in our greatest hour of need. He was totally there. At some point after surgery, I remember in my drugged stupor trying to tell Simon and my folks about it and I think I scared my mom to death that I was looking into “the Light” or something. No, hahaha, it wasn’t some kind of weird drugged-out experience; I was IV and drug-free at this point. 🙂  And no, there wans’t any kind of shining light or longhaired man in a robe and Jesus sandals. It was just a simple quiet, a calm amidst the storm of pre-op preparations.

I’ve been a Christian since I was 15. It was a life-changing experience then and it has continued to shape my life as I try to follow HIs unique plan for me. But HE continues to amaze me with HIs love and faithfulness, now nearly 14 years later. Jesus is as real to me today as if He were standing here next to me while I type this. He gave me the ability to change my circumstances in regard to my health, and the strength and power in which to do it  in. Neither were things that I could do on my own. oh, how I wish I could let each and every one of you know personally just how deeply I feel about it. It’s almost the kind of thing that I can’t really begin to speak of; it’s something that is felt, very deeply.

So surgery lasted several hours. I, of course, was in lala land. As a vivid dreamer, I fully expected to have some crazy technicolor dream, but none of that was to be had. Finally after a few hours of recovery, they took me on up to my room.

Looking back, I have next to no recollection of the first two days after surgery. THat’s probably a good thing. Pain meds are also a good thing – Morphine, I’m lookin’ at you, sister. As far as pain goes, it really was similar to having a c-section. Incision was similar, size-wise.

The nursing staff at Mayo were incredible. If you’ve ever been in the hospital, you know that there are good nurses, and then there are bad nurses. There was not a bad one in the bunch at Mayo.It was like they were all the cream of the crop and took great care of me.

The only one that kinda threw me for a loop was a younger nurse. If you’ve ever had surgery (or childbirth) they’re really concerned about your bowels waking up after surgery. So they’re always asking you about the state of your bowels, if you’ve (ahem) gone yet, etc. This one poor nurse came in — I think she just wasn’t up to speed on my case yet, because after introducing herself, she says, “And I also wanted to check: have you had a bowel movement yet?”

Now, me being colon-free, this just wasn’t going to happen obviously. “Um, no,” I said. “And I probably won’t, either. I just had my colon removed.”

“OH,” she gulped. The look on the poor girl’s face – it was priceless. I kinda wondered if the other nurses had put her up to it, like it was some kind of new-nurse hazing or something.

I was released on Sunday and we went back to our hotel and made arrangements to prolong our stay. I just had no energy to get back on a plane and travel. It was an emotional few days. And to top it off, a blizzard hit. An honest-to-goodness blizzard. The hotel also had a convention coming into town and needed our rooms, os they ended up making us a deal and putting us in the hotel’s presidential suite (because otherwise, there was no room for us in the inn  hahaha). This was truly the biggest blessing because we could all be together.

The real heroes of this story are my parents and my precious Simon. I could NOT have done any of this without their support. No way, no how. Their emotional and spiritual support is unparalleled. Simon is my rock, entirely. I don’t know what I’ve done to deserve him, but I know that I got the last good man on planet earth. He is incredible. We’ve had a crazy year, and there are plenty of people who would’ve jumped ship a long time ago. He’s just not that way; he’s amazing.

So how ’bout since coming home? Being home is another huge blessing. We’re staying with my parents because Simon’s gone back to work and I need help with Jude. I’m not going to lie – it’s been a really hard recovery. REALLY hard. I think I was prepared for the physical pain, but it’s the emotional toll of it that I was not fully prepared for. I have cried every single day and I have a general feeling of, well, hating the stupid ileostomy bag. I feel icky, tired, sad. I feel totally useless right now with Jude because I can’t lift anything over 10lbs for 6 weeks, and that’s a lifetime in toddler time. UGH. Jude is so busy and he’s also so snuggly. That’s where I’m struggling — I just want to be able to pick up my baby when he wants to be comforted. I want to pick him up out of his bed if he needs to be comforted in the middle of the night. Heck, I want to change his DIAPERS!

The silver lining in all of this? I can’t go grocery shopping for 6 weeks. 🙂  The cart’s simply too heavy to push! I might get a hernia! darn!  😉

Today we went to visit the local ostomy nurse at the big hospital here. WOw. What a drastically different experience from Mayo. It was not a bad experience, per se, but as we walked out, I had this very distinct feeling of gratitude for our experience in Minnesota. I don’t know if it’s something in the water up there, but it is just different. Better. More personal. More relaxed. Sharper & more focused. I really am thankful that my parents made it possible for us to go up there.

Friends, once again, thank you for all of your prayers, notes, phone calls, etc. We can only begin to express how thankful we are. Please continue to pray as we are all adjusting and settling into a new normal. Pray for me as I’m struggling emotionally and am seeking a good attitude, realizing that all of these hardships are temporary. Pray for my mom, that she has enough strength to help keep up with a precious but precocious toddler. And for Simon as he goes back to work and for Dad as he is supporting all of us as we need it. I love each one of them so very, very much.

Ok, and a gold medal to YOU if you’ve made it this far on this post! Whew! Long!

xoxxo, Rach

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This Week

Well, kiddies, the time is upon us! Tomorrow morning, I’m off to the Mayo Clinic in Rochester, MN, and Wednesday I roll on in for surgery.

I can’t believe it’s been a month since we were up there. In some ways, it’s been a blink of an eye; in others ways, it’s like it’s been three years. I’m not going to lie – it’s kinda been a hard month. I really wish that I could’ve just gotten it over with when we were up there a month ago. Having four weeks to second guess my decision hasn’t really been fun. About two weeks after we got home, I had my big meltdown about it all. I sobbed on the phone to Simon that I just didn’t know if I could really do it, and he told me that I really needed to stop googling the heck out of things. He knows me so well – in my ever-present desire to be on top of information and well-informed, I was driving myself insane by googling the surgery and reading everybody’s random horror stories. I just couldn’t take it anymore. So I have taken a google hiatus! And it was the best thing I could’ve done for myself.

The other thing that I did for myself was go talk to a counselor about what I was thinking and feeling. When I was pregnant with Jude, I was struggling with anxiety big time.  My OB gave me the name of a counselor to go talk to, and it was the best thing I could’ve ever done for myself. I went to see her several times after Jude was born, and occasionally from time to time when I need a neutral third party to bounce some ideas off of. I called her up and made an appointment, post-meltdown. I was struggling with having to be the one to make a decision about surgery – I mean, isn’t this just something that someone else should make the call on? I thought the only time someone actually wanted surgery was when they’re getting a tummy tuck. Or a nose job. In no way is this the same thing!

Anyway, my counselor asked me about how I felt about myself when I’m sick. I told her that I hate being on steroids, that I hate looking at pictures of myself when I’ve been on them, that I feel totally out of control of my body. And do you know what she said? It was golden, totally priceless — “Rachel, this disease is stealing your joy. And you have the opportunity to take it back.”

Whoah. That was totally worth the hourly fee right there! And she was so right! So even though I really didn’t want to be the one to make the decision to make surgery, I am the one making the decision. I am stepping up and taking my life back. And in that moment, I felt a joy about the entire situation that I had not felt before. My time of mourning about it was over. It was time to find the joy in the situation, and look forward to all the good changes coming.

The other awesome thing that happened was when I found Daniel over at the Real Estate Zebra. A few years ago, Daniel went to the Mayo Clinic because he had ulcerative colitis, and he ended up having the same surgery as I will. He was so encouraging – he called me up on the phone and was more than willing to share his experience with me. I can’t tell you how much it meant to me. He struck me as a very charismatic, upbeat person, and the thing he kept saying was, “You will not regret this. You are going to feel so much better, you won’t even believe it.” Whew. Daniel, I am grateful for your input and how open you were in your experience! Thank you!

Finally, more than anything, I have a peace about this entire experience because I know that God is in control. I felt His presence when I sat in the office at the Mayo last month and told the doctor that I wanted the surgery. In my Bible study this semester, we were talking about Jesus when he heals the lame man at the Pool of Bethesda. He asks the man, “Do you want to be well?” What a question! I mean, wouldn’t you think that someone who had been sick for 38 years would want to be healed? But when you think about it, sometimes when you’ve been sick for so long, it’s just easier to stay in your sickness. You can’t remember what it was like to be normal, so it’s just easier to be how you are. Stuck. Because being well requires work, and taking on a whole new set of responsibility. But Jesus knew that – and He also wants us to take action. It means we have faith.

So there you have it. This week, I’m taking that step. I’m choosing to be well. I’m stepping out on faith. It doesn’t mean I’m not nervous or not scared. I am. But it’s going to be okay.

Now we just have to decide what The Last Supper is going to be. 🙂

I’m sure I’m going to pop back in and out over here and give updates as the week goes on. We fly out tomorrow, have a consult with the surgeon on Tuesday, and then go in Wednesday morning for the surgery. As of now, we’ll fly back home on the following Monday.

Thanks so much to everyone who’s followed us on this journey! Your thoughts, prayers, and well wishes here have meant the world to both Simon and I.

xoxo, R.

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Mayo, Day 4

This morning at 9:00, we were bright-eyed and bushy-tailed and on our way over to the hospital for my CT scan of the good ol’ pancreas. The thing about doing a CT is that you have to drink a bunch of dye/goo that tastes kinda milky and kinda like … sweet chalk. I can’t think of any other way to describe it. It’s not something good, I can assure you.  At no point would you want to, say, chug a gallon of it when you’ve just gone for a run. Nor would you just want to reach into the fridge and drink it up with a chocolate chip cookie.

So there we sat, and after receiving an IV port (because not only do you have to drink all that goo, but you also get iodine injected into your veins too), the nurse brought me my three bottles, labeled with 15-minute intervals. Chug chug chug!

Then at 10:15, they called me in and I went to lay down on the table for the CT. I was feeling reeeeeeaaaaallly waterlogged. And slushy. I mean, I drank a lot. Then they hooked the IV up and gave me the iodine stuff and told me that I was going to feel really warm and like I peed my pants. Seriously?? Within 5 minutes, the CT was done, and then I promptly sat up and threw up everything I had just drank. Yeah like that’s not totally embarrassing. So then I was done and on my way.

We came back up to the room and just laid around until my appointment with my GI to discuss everything at 1:00. When we showed up to the digestive floor, a rather dapper elderly man in a wheelchair was sitting there next to us. He rolled on over and decided that we looked like nice people and needed to talk to us. He was 92 years old and had been married for over 60 years. He started telling us how he immigrated from Scotland and how his  mother was a midwife, and actually that was rather a fortuitous thing because as it turns out he got involved in the sales of a new invention at the time, a device called the diaphragm that really changed birth control….

Just when things were about to get interesting, we were called into the doctor’s office, and left poor Mom sitting there with Mr. Diaphragm. Turns out, he then went on about how he was a salesman and tried to get her to become a part of his sales team, selling a special kind of face cream! He also told her all about how he and his wife have come to the Mayo clinic since they were young, and now they’re here for a few days. But when they come, they always get separate hotel rooms because apparently he snores. A lot. Poor Mom got quite the earful!

Meanwhile, we went back and met with Dr. Pardi. He definitely had good news for me. My Bone Density scan came back better than normal which means that the past 3 years of off-and-on prednisone haven’t done any permanent damage to my bones. That is awesome! The second bit of good news was that he thought that my pancreas looked good, that the spot they had previously seen was nothing to worry about, and that if I ever had issues with pancreatitis again, to let them know. Pancreatitis can be a side-effect of medications for UC, but it can also just spontaneously pop up in UC as well. He thought that the gallbladder could’ve been involved, but if this ever happened again, to let him know before they just decide to start taking random parts out of me.

Which led into our next discussion about what to do about my ulcerative colitis. What will my plan be? Well, as of today, I am scheduled to come back to the Mayo Clinic the week after Thanksgiving to have my colon removed in the first of two surgeries. I will have a temporary ostomy (um, fun, right? blah) and then 3 months later once everything has healed, I will come back in February or March and have the second surgery that will allow me to have normal poops just like everybody else. They basically create a new bowel.  Everything is done by laparoscope.  And in the end, 92% of people who have this surgery done are thrilled. That’s pretty amazing.

The more I thought and prayed, the more I realized — why wouldn’t I take the opportunity to be cured of this disease? To put an end to the past 3 1/2 years of a rollercoaster ride that have really really sucked? To not be sick every other month? Why wouldn’t I take that opportunity? Can I be brave enough to endure a few months of discomfort, of inconvenience and ickiness, only to have a chance to have a normal life again? Can I trust that God has a great plan for my life and that He has known all along that this day would come? Yes. I can. I can do all of this. And I can do this with a happy spirit and with joy in my heart.

Despite my initial feelings of being overwhelmed and saddened that this is, in a way, my only choice,  I feel like I’ve been given a whole new chance at life. I’m never going to have to take all those meds ever again! No more immunity-hindering, serious drugs! No more Prednisone that makes me bloated, puffy, irritable, and crazy moody!   Heck, I figure that at Thanksgiving, we are going to PARTY! I’m gettin’ rid of this nasty ol’ colon and moving on to bigger and better things!

The doctor looked me squarely in the eye. “You seem really at peace with this decision,” he stated. And the answer is, yes. I do. I’m not going to say that I’m not going to experience moments of doubt and panic, wondering if I have made the right decision.

But in some ways, we’ve been down this road before. A few months ago, I watched Simon struggle with a decision. He had to decide that he had done as much as he could for the company he was working for and he had to make the toughest decision ever – to leave. It wasn’t a decision he wanted to make for himself; he really did want it made for him, in some ways, much like I wished that this decision would’ve been made for me. And while he knew that while the next few months of unemployment weren’t going to be easy, he knew that there was light at the end of the tunnel and that soon things were going to be okay. I can so relate.  And now, at the other end of that tunnel, now that he is gainfully employed and loving what he is doing, I can say praise God – there was a plan and we are going to make it.

It’s been an emotional week here at Mayo, for each and every one of us. THANK GOD for my parents and for Simon. I would be lost without them. Their support has been HUGE. Also, I thank each and every one of you for sticking around and following my journey here. Every comment left has meant SO MUCH TO US. I know it’s not the typical fun, design-related stuff, but like I’ve said before, this is my life. And I can’t tell you how good it feels to sit here and write all this out, and get it off my chest. I promise that I’ll be back with more fun stuff next week. 🙂

xoxoxo,
Rachel

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Mayo – Day 3

Just updated! So sorry – Flickr is doing weird things with my photos and it really angers me. Hopefully these will all show up again. Apologies!


I’m not even kidding you when I tell you that coming to the Mayo Clinic is being in an episode of the Jetsons. That’s what it feels like – some kind of cosmic little city where everybody buzzes around and things are whisked away on conveyor belts. We keep using the phrase “well-oiled machine” but really there is no better way to describe it. Everyone is ridiculously courteous, but not falsely so. The employees are precise and exacting. It is almost perfectly timely. They give you this printed schedule of activities, including very precise instructions for your specific tests or examinations. It’s insane. As a visual communicator, I can really appreciate the level of “togetherness” they have when it comes to keeping the patient informed and on time.

At 9:40am, I showed up for my blood tests. I was waiting in a large hall with probably 100 other people, but right at 9:40 on the dot, my name was called, identity verified, and then I was whisked into a room to have my blood drawn by the most capable phlebotomist I have ever met in my life. And let me tell you, I have been stuck more times than I can count. Then my blood was sent in a little box on a conveyor belt to wherever the conveyor belt goes. And that was that.

So we grabbed Mom & Dad, and hopped into our rental car. The valet dude at the hotel had told us that there was a really gorgeous scenic drive up to Wabasha (the city where Grumpy Old Men was filmed apparently) and it sits on the Mississippi River. Um, wait. The Mississippi??  Where was I in geography class? I had no idea it came all the way up here? We hopped into the car and began a gorgeous scenic drive through the Minnesotan hillsides and saw not only the most bucolic little farms, but some really amazing foliage. I know,  I know – I sound like I’m 90 years old, but it seriously was gorgeous. I can totally imagine living out here. It’s beautiful.

A nice drive across the Mississippi and we entered into Wisconsin. What the heck? We’ve never been – might as well go since we’re here! Before we knew it, we had entered into yet another charming town and fell upon the Nelson Creamery. When in Rome, do as the Romans, and when in Wisconsin, eat cheese.

Piling out of the car, I was reminded a little bit of a grocery store we had visited in Napa. This place had the same charm as many of the little towns and shops there. So then we were back on the road, enjoying the foliage and the crisp, cool weather. We drove down the Mississippi on the Wisconsin side, and then crossed over into Winona, which is yet another charming Minnesotan town. Man, Minnesota has the market on cute! Who knew?









Did you see all those gorgeous Tolix chairs in the Nelson Creamery? I died. It was so fabulous. Style oozing out of the grout of that building. And yes, we did buy a “Eat Cheese or Die” button.

At 2:40, I returned to the Mayo for my bone density spa exam which was like laying on a tanning bed in a hospital gown and then before I knew it, that was that. We were done for the day. It was decided that we would hop back into the car and make the haul into Minneapolis.

Internet, you know me. You know I can’t be thisclose to shopping Mecca (ahem, the Mall of America) and not go. That would be ridiculous. And really, there doesn’t seem to be much else to do here, and since our time is limited, we were off. We hopped in the car at 3:30 and by 5:00, we were parking by Nordstrom. Purchases made by 5:30. Really, my mom spoils me rotten. R-O-T-T-E-N.

To be fair, the MofA really isn’t all that impressive. It wasn’t as big as I thought it would be. The stores are the same you might find anywhere else like Dallas (Oklahoma STILL isn’t cool enough for a Bloomingdales or Nordstrom, so that still made my day). It just happens to have a giant rollercoaster and an aquarium in the middle of it. We had a good time finding things for Jude, though, too. For his birthday tomorrow, he will receive a darling set of fireman boots that will just totally make his day. But shhh – don’t tell him yet. 🙂

Oh, wanna see a photo of our room? It’s the gnarliest valance you’ll EVER see in your life. It drives me absolutely insane to look at it. It’s like a trainwreck of drapery proportions, and you’ll understand when you see it. Are you ready for this?

BAD.

Well, so what about the more serious stuff? We’ve had lots of talks over the past day about what we learned yesterday. No surgery will happen this week regardless of if  that’s what I decide to go ahead and do — I have to wait at least a month because I need to be off of the Remicade for 8 weeks before I can go in for surgery due to problems with my immune system and the fact that it messes with your body and its ability to heal itself. I’m halfway there, so hypothetically I guess I could go in for surgery as early as a month from now, if that’s what I so chose.

I just keep coming back to the idea of being UC-free. No more drugs, no more impaired immune system b/c of all the heavy duty drugs I’ve been on, no more prednisone (this is the biggie).  No more rollercoaster of digestive craziness or fear that I’m going to get sick when we’re out somewhere, or on and on and on. It is such a serious step to take – I mean, who really wants to make the choice to have elective surgery this major? This is going to sound like a funny metaphor, but in my mind, it’s like having to make the decision to put your dog to sleep. You don’t want to be the one to have to make that call – you want the decision to be made for you. Like someone else says, “You know, you absolutely HAVE to have your colon out or you are going to die.” Fortunately/unfortunately, it’s not that way with me. Colitis doesn’t kill anyone. It just makes your life crazy miserable. When you see it in black and white, it sounds like a fairly simple decision: just take the darn thing out and call it cured.

I think more than anything, I have to wrap my brain around all of this. There are several things I do know: I know that God has a good plan for me and that none of this shocks Him. I know that His ways are not my ways, his thoughts are not my thoughts. I know that He loves me more than I can ever imagine, and that He has only the best things at heart for me. And I know beyond a shadow of a doubt that I want every last bit of this silly colitis experience for the past 3 years to glorify Him. Because it has to be worth SOMETHING. And He will wreak good out of it. I know it.

You guys, I can’t tell you how helpful – how cathartic – it is for me to write to all of you on this blog. We got more hits yesterday than ever before, and I know that each of our friends and family are checking in to see what’s happening and you are praying. That is awesome. You have no idea how loved we feel and I know that God is in control.

Ok. Enough for now. I’ve gotta get up in the morning for the pancreas CT scan. Love to you all –

xoxox,

Rach

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Mayo, Day 2

 

Rochester INTERNATIONAL Airport. Really? International?

Wow. This has been a really long day. My appointment was at 9:30 this mrning, but I was supposed to check in at admissions in the main building here at Mayo at 8:45. At the Mayo Clinic, everything is connected by a series of skywalks and subway tunnels. It’s really an impressive system and there are a bajillion people scurrying all over the place. It’s initially very overwhelming, but once I had checked in at admissions, it was like I was a small cog being carried in a a well-oiled machine. Up to the ninth floor, to the digestive diseases department, and there we checked in and were given a pager, as well as a stocked packet of all of my medical records that had been sent from home.

 

I was beginning to feel really nervous. What if I had forgotten something? It was almost like stage fright – like I would forget my lines. We were ushered into an exam room, finally, but a lady named Patty who looks just like my Aunt Cheryl, but with a Minnesotan accent. She was super nice – she was also our scheduling coordinator. The room itself was large, and offered a long banquette for us to sit on. There was a window that looked out over the impressive Mayo campus on a pretty fall day.

Dr. Pardi was tall and straightforward. He sat down and reviewed my records and we discussed the past three and a half years of my disease. He was concerned some over the two episodes of pancreatitis I had experienced, and wants to further investigate that. However, when it comes down to treating the ulcerative colitis, I have three options left:

  • Option 1. He believes that Remicade (the infusions I’ve been receiving every 4 weeks) will eventually start to fail me as it won’t work forever. The body starts to get used to it and it’s efficacy is diminished. So what does that leave me with? I can’t stay on prednisone forever, and I certainly do not want to. I hate the stuff. And I’ve exhausted nearly every other drug for ulcerative colitis. So Humira is my very last option, and it is an injection that I can give myself.
  • Option 2. Sign up for a clinical trial of a new investigational drug that might be held in Oklahoma City. The clinical trial is 50/50 in many ways. You may or may not respond to the treatment; the caveat is that you may or may not actually be given the drug. It could be that you are the recipient of a placebo. So that’s essentially a crapshoot.
  • Option 3. Have surgery to remove the entire diseased colon, effectively curing me of ulcerative colitis forever. This surgery is done in two parts. The first part, they remove the colon and give you a temporary ostomy bag (so, basically, you poop into a bag). Everything has to heal, and 3 months later, you go back for round 2 of the surgery, and you are able to poop naturally and the ostomy is sewn up. You don’t ever have to take medicines for UC ever again, and you are essentially cured of the disease. (NO MORE STEROIDS?!? WHERE DO I SIGN UP?)

When the doctor told me that the Remicade was eventually going to fail me, it was as if I felt like he told me that my husband was going to meet another woman and leave me. I felt incredulous, unbelieving. What about all those promises that Remicade made to me? Wasn’t it going to be there forever, in sickness to bring me to health? I mean, c’mon — you were pretty expensive there, Remi. Was I not keeping up my end of the bargain? And that’s when I started sobbing like a baby in the doctor’s office and went into total shock. He was a straightforward doctor, like I said, and he just laid it all out there, unemotionally, in black and white. Thank God Dad and Simon were there to hold me together and to fill in the blanks on things because I was completely unable to form a sentence. I wanted the Aunt Cheryl lady to come back and hold my hand. Before I knew it, we were scheduling a consultation with the surgeon for the afternoon, and I was being handed a packet of information on educating yourself about J-pouch ileoanal surgeries.

To be fair, none of this was really all that earth-shattering to me. I’ve been prepared for this. I’m a smart cookie – I also like to know my worst-case scenario, so you better believe that I probably could’ve given the doctor the presentation on how they do the 2-stage surgery and then what to expect afterwards. I could tell him the exact URL of UC patients’ blogs that have experienced it. I know it all. But now the rubber hits the road, and I am mulling a decision and that changes everything.

I think I came here hoping beyond hope that there would be just something else. Anything else. Anything other than pooping in a bag or steroids. Like maybe my doctors in Oklahoma just don’t have a clue, and the Mayo people have been hoarding all the great UC secrets for the Chosen Few that manage to make the haul up to the Frozen Tundra. But the facts are these: I cannot — I will not — be on steroids the rest of my life. It’s not physically possible. And Lord only knows what other damage it’s caused (hence a bone density scan I’m getting later this week). Prednisone is the devil.

So what else is there to consider? Fertility, for one. If I go through with it, it could seriously mess with my chance to have another baby. Which sucks. But it’s not a completely done deal – plenty of people go on to have babies and they’re fine.  And then there’s also the whole living-with-the-j-pouch thing, which has its complications.

But in my mind, it all comes back to the whole no-drugs thing. No more drugs. No more getting up every day and taking 15 different pills that mess with my brain and my body and my gut. I cannot even imagine that. For three and a half years, my life has been controlled by my gut, and if I could have the opportunity to not have it rule my life, that might be totally awesome.

So all this to say, it’s been a hugely emotional day. They’re going to look at my pancreas later in the week because previous CT scans from previous hospitalizations show that there’s a spot on there, which could be nothing but could be something. It was also at this point that I started boohooing all over again in the doctor’s office. Where in the heck is the Aunt Cheryl lady?!

Afterwards, we all went to a restaurant and ate Walleyed fish. And I was amazed at how calm my parents were. I am a complete mess and will remain a mess the rest of the day, although I manage to hold it together when I meet with the surgeon, an Asian woman that draws comparison to Christina Yang on Grey’s Anatomy. She enters the exam room with two men in black suits, her assistants. She is straightforward, matter of fact, but is able to answer my questions about reproductive concerns. I am calmed by this.

 

yup, that's a corn water tower

So then we decide to rent a car, and drive around. Rochester is a really gorgeous little town with lots of pretty little houses. The leaves are all changing, and it really is just so pretty. And then I start up Waterworks Round 17 of the day. I don’t know why. I’m just crying and overwhelmed. So we decide that now is the optimal time to take Bridget’s advice and get ourselves to the Canadian Honker because quite frankly, we need a pick me up and any place named Canadian Honker (or Canadian Hooter, if you’re like us and can’t remember names right) is bound to perk us up.

And it did. We ate lots of yummy buttery garlic toasts, and I had broiled walleye and then there was this incredible coconut cake that made our day. And as we were leaving, we highly considered purchasing some of this:

Because let’s face it – this is a trip all about poop.

Well, so now we’re back in our room for some downtime. Tomorrow morning I will go get some blood tests, and then I will get that bone density scan. Who knows – we might even get in a trip to the Mall of America before this thing is all said and done.

 

So there you have it. If you’ve made it this far, reading about poop and doctors and surgeries, you are truly awesome.  I know it’s heavy stuff, but like I’ve said before, I’m all about being real and transparent, and I guess this is about as real as it can get.

Thanks everybody for all of your comments, love, prayers, and support. It has made a difficult day a little easier to get through.

xoxoxox,R

 

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