Tag Archives | mayo
28
Oct

Mayo – Day 3

posted by , October 28, 2009

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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27
Oct

Mayo, Day 2

posted by , October 27, 2009

 

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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