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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12 Responses so far »

  1. 1

    katie said,

    I am so happy to hear that you got good news today and that you are at peace with your decision. You are in my thoughts!

  2. 2

    Kira said,

    I have been praying that you might find peace with whatever decision, and I am so thankful that our Creator has brought you to that place! I know it has been an emotional roller coaster, but I am so excited to see where God takes you on this journey. I know that He has great plans over the next few months for you…to Him be the glory! See you when you get home sweet friend! Oh, and never apologize for speaking (well, writing) from the heart. The world needs more transparency these days, and your vulnerability has been inspiring!

  3. 3

    Kristin said,

    This is all great news! My mom had an ostomy (permanent though for different reasons) and it gave her a good excuse to shop for some cute new clothes 😉 It just took her a little time to adjust to caring for it. You will continue to be in my thoughts and prayers. {{hugs}}

  4. 4

    Billie Doner said,

    So glad to hear the good news about your pancreas and the bone density scan. I believe in my heart that you’ve made the right decision concerning the surgery and I can imagine what a difficult decision it was to make. God never knew if I was coming and going while we had Casey at the Mayo. One minute I was praying they would find something they could surgically remove and cure him of seizures, the next I was praying I would never have that decision to make.
    Thanksgiving this year will be a celebration of thanks for the future you are going to have free of this terrible disease. All my love ~ Billie

  5. 5

    Mara said,

    Rachel, even though we don’t keep in close contact, I’ve still been thinking and praying for you. With all the stress and hardships you’ve faced this week, I love how you still see the beauty in small things, like the chairs at the creamery and the fall trees. Hang in there girl.

  6. 6

    Sylvia said,

    Rachel
    I just wanted you to know that I have been keeping up with your visit to the Mayo Clinic…I know you have going through a lot and I just want you to know that I do think about you and am praying for you! You’re going to do great in November!
    With Love,
    Sylvia

  7. 7

    Reseth Oberg said,

    Hello Love,

    I just wanted you to know that we are praying for you! I pray that you have peace and enjoy your time up north. I have family up there that would love to have you if you need a place to relax. They are near Duluth. Let me know and I’ll get in contact with them for you. http://www.superiorgatewaylodge.com/ Love ya girl!

  8. 8

    mrslimestone said,

    Oh wow – I can’t even imagine the ups and downs you’ve been through. Im happy to see you’ve come to a decision you’re confident in. You’re very brave to be so decisive and to share it with all of us. You are in my thoughts and prayers.

  9. 9

    Bridget said,

    Gotta love those chugging contests…yikes.

    And great news with regards to the bone density scan and your pancreas. 🙂

    Looks like you’ll have another chance to visit Minnesota – maybe you can make it to Red Wing next time! (or Lake Pepin – the place where Laura Ingalls Wilder lived!).

  10. 10

    Cheryl Horn said,

    I teared up when I read this entry. You and Simon will have to come to celebrate “feeling GOOD in Paris” this time! I am so thankful for the healing gift of medicine that God has given us.

    LOOOOOVEEEEE you bunches,

    Cheryl

  11. 11

    Aunt Jo said,

    It is apparent through your sweet, pure spirit, that God is working Mightily in you.
    I’m so proud of you. You are not only a strong woman, but a woman of strength that comes only from God.

    I love you, Aunt Jo

  12. 12

    Cuzin' Kathy said,

    Sweet Rachael,
    I know what trauma you are going through. You are in wonderful hands. These people ar so good at what they do. I just can’t speak highly enough about them. It gives you comfort to know they are this well oiled…huh?
    I crashed Friday, I climbed up on a chair to search a locker up in the top. The chair flipped me, I grabbed the locker and pulled it down. I got pretty banged up and a bad concussion. I’m stilll really dizzy, and have slept for the last two days almost straight. I spent Friday night in the hospital in an observation room. I’m better tonight, but I still have to be very careful when I get up because of the dizzyness.
    I enjoy reading your musings, I emphasize with so many of you feelings, I love Rachael, I know God has you in his loving hands and you are going to be just fine.
    Kathy


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