My New Normal

I've decided to write all of this down as a way to get it out of my head and to help me accept that this is my new normal. I can't promise it will be extremely eloquent or profound, but I assure you it will be long, so prepare yourself.

At the beginning of December, I went to see my doctor because I was having some extreme abdominal pain. I had also missed my period and wondered if I might be pregnant. When the pregnancy test came back negative, my doctor decided I should have an ultrasound to see if we could tell why I was having this pain. Just a few hours after the ultrasound, I received a call from my doctor informing me that there was a 4 cm mass in my abdomen. The mass couldn't be identified, and all they could tell was that it was near my colon, so they told me to go get a CT scan right away and referred me to a GI specialist for further testing.

The following week, I met Dr. Pedersen for the first time. I went to St. Mark's hospital and sat in the exam room surrounded by posters with the words "colon cancer" all over them. Comforting. Dr. Pedersen was very attentive and I could tell he was compassionate and an overall good guy. He asked me lots of questions and did a small exam before going to review my ultrasound and CT scan results with a radiologist. When he came back, he had a completely new look on his face. He was concerned. He told me that things looked serious and that cancer was at the top of the list. He recommended I have a colonoscopy then meet with a colorectal surgeon. He told me things were going to move very quickly from this point on and that I was going to be under the best care possible. I left the hospital and sat in my car in the parking garage for about 20 minutes and cried. Colon cancer? Could I really have colon cancer at 30 years old? Jake has a friend who survived it just a few years ago and he's my age, so yes. I could really have colon cancer at 30 years old. Wow. I guess I should have made Jake come to this appointment with me. I just didn't expect such serious news. I put myself together and went back in to the hospital to schedule the colonoscopy for the next day. As I opened the door to the endoscopy center, I noticed a bunch of gray haired people sitting in the waiting room.. tears again. I'm not old enough to get a colonoscopy! The woman behind the desk was very sweet and kind in helping me get everything situated with our insurance and scheduling. I left again and managed to drive away without crying too much. When I got home, I told Jake what had happened (I left out the cancer part.. I wasn't ready to accept that yet). Then I started to prepare for the colonoscopy. Ok guys, I'm not going to be gross and get into a lot of detail here. I think we all know what happens when you prepare for a colonoscopy. I'll just tell you this; it didn't work.. completely. About halfway through the "preparation" I got extremely nauseous and threw up. I made Jake call the on call doctor and ask what we should do and they just said I'd need to start over. Um, nope! Not going to happen! Sorry guys, I'm out. I'm not willingly putting myself through that again. I was already extremely ill, tired, emotional, sick, weak, and I was not going to put my body through something it didn't seem ready to handle. I told Jake I was going to bed and that I'd cancel the procedure in the morning. He tried his best to get me to change my mind, but I was being as stubborn as I could, so he eventually let me have my way. When I called the doctor's office in the morning, his medical assistant was really understanding and told me she still thought I'd be able to make it to the procedure that afternoon if I wanted to try taking something different combined with some anti-nausea medication to help keep everything down. She really encouraged me to try because, as Dr. Pedersen said, everything should be taken as a high priority right now, so I decided to go through with it. I called Jake at work and let him know it was back on and followed her instructions. That afternoon we went to the endoscopy center and I walked in again to a waiting room full of gray haired people. I tried not to let it get to me and just joked around with Jake about how lucky he was to have married such a hot older wife (even though I'm not actually older than him). I feel like I should tell you, I was really nervous. I didn't know what to expect in this procedure, and that was scary to me. The first nurse to take me back was a bit rough around the edges. I laughed again because I just knew I'd get the one who was on the end of a long shift and just ready to go home. Thankfully, after getting changed, a new nurse came in. One with a much nicer demeanor who made me feel more at ease. She explained what was going to happen and then took me back where I talked for a few minutes with Dr. Pedersen. Then I took a 45 minute nap while he did his job. When I woke up, Jake was there and he told me how long it'd been. He also told me they'd done a few biopsies and had given him some pretty neat pictures to take home. Before we left, Dr. Pedersen came in to see me. He told me that everything had looked pretty good, and that he'd just biopsied a few places that had swelling. He was able to determine the mass wasn't inside my colon, but that it was possibly pushing against it. He also said that when he saw me in his office the day before he was pretty sure he was looking at a girl with cancer, and after this procedure, he was a lot less sure of that. Those words were a huge relief to me. And it was the first time cancer was mentioned in front of Jake. He took it better than I did. When we got in the car, he asked me what I wanted to eat. It'd been about 30 hours or so since I'd eaten and I could think of one thing; Del Taco. So that's what we got. We went home and I was plopped down on the couch with my chicken soft taco, an avocado, and some jello. Heaven! I survived my first colonoscopy. It really wasn't that bad. I didn't have any discomfort or feel sick at all, so the worst of it was in the preparation. Now all I had to do was wait for the results of the biopsies, and in the meantime I would meet the surgeon.

The day after my colonoscopy, I met Dr. Murday. Her office is also at St. Mark's hospital. I'm going to say that she reminds me a lot of Jake in certain ways. She's very precise and thorough and extremely smart. She went through my entire medical history pretty much from birth to present day, and Jake loved every minute of it. I brought him with me this time because I'd learned my lesson before. See, Jake likes to play this game with me where he asks me questions and just keeps going if I don't give what he feels is an acceptable answer. Jake is a very logical person, so everything has a reason. I'm an emotional person so sometimes the answer is "just because". End of story. Well, Dr. Murday wasn't letting me get away with anything less than a completely reasonable answer so he just smiled the whole time. She told me she'd spent a lot of time talking with Dr. Pedersen and a handful of different radiologists who were all just fascinated by my scans and this mysterious mass that was in my abdomen. She'd also talked to an OBGYN oncologist as they were still unsure if the mass was on my colon or my uterus. She drew me a picture of all of the organs in that general area and went over the list of about 5 different possibilities they had all come up with. What was on the list? Well, cancer of either the colon, uterus, ovaries, or bladder, Crohn's disease, endometriosis, appendicitis, and a couple others that I don't really remember. She pretty much ruled out appendicitis though, because I wasn't on my death bed, and I should be if that was the case. She recommended I have an MRI to see if they could get a better look at this thing because the image would be a lot more focused and clear. We were also coming up on the holidays now so if I was going to have surgery, it would probably be pushed into January. This was ok because they were starting to be less convinced that I had cancer, and from a biological standpoint, a couple of weeks wasn't going to do any damage. So I scheduled the MRI for the next day, which was a Friday. I waited the whole day for a call, and when I didn't get one, I was pleasantly surprised. In my mind, if it'd been serious, they would have called me the same day. Just like they did with the initial ultrasound. I let myself relax a bit at this point. Over the weekend I did some Christmas shopping and prepared to head down to my mom's house for Christmas with my family. The following week, Dr. Murday called me and told me that the MRI showed the mass had shrunk. This meant they could be about 80% sure it wasn't cancer. They could also see that it was pushing up against my colon and uterus and she recommended laparoscopic surgery to take a look at everything. At this point, she was fairly certain I had endometriosis. She was planning to do the surgery with the OBGYN oncologist to confirm this. I still needed answers, and this seemed like the next necessary step towards that, so we scheduled the surgery for January 9th.

That Monday morning came a lot faster than I thought it would. I was scheduled as the last surgery of the day, so I wouldn't check in at the hospital until after 2:00 in the afternoon. I tried to get as much sleep as I could and just rest throughout the day. I also tried to avoid eating the ginger cookies I'd made the day before.. they were so tempting! When we got to the hospital, we ended up waiting about 5 hours before I actually went in to surgery. I talked with Dr. Murday for a minute beforehand, and met with my anesthesiologist as well. The operating nurse reminded me a lot of my cousin Shelby, and that just made me feel so happy and comfortable. Once I got in the operating room, they gave me a warm blanket and a sedative and off I went to dream of big pieces of pizza. I don't remember much else from that night. I know Jake sat with me on the bed in my room after I was out of recovery because I wanted him to hold my hand, and he was watching the college national championship football game (for which I correctly predicted the winner beforehand). I also know they told me they'd removed my appendix during the surgery because it was mixed up in a ball of swelling in my abdomen. I was woken up multiple times throughout the night to get up and move around and use the bathroom. There were also alarms that kept going off on my iv machine that would jolt both me and Jake awake in a panic. It was not the best night of sleep I've ever gotten. The next morning I was doing pretty well getting up to use the bathroom on my own, and they told me as soon as I was able to eat solid food without feeling sick they'd let me go home. We left the hospital in the early afternoon, and I just spent as much time relaxing as I could. During the surgery, they pumped my stomach full of co2 gas so they could see everything. This was the most uncomfortable part of the recovery process for me. That gas bubble was relentless. As soon as I'd stand up it would immediately rush pain to my shoulders and give me a side ache as if I'd been running for miles and I couldn't breathe. Walking from room to room and up and down the stairs in our house was pretty dramatic that first night. I'm so glad Jake was willing to put up with me. My mom came to town the next day for a pre-op appointment of her own, and she stayed for a couple of days to help take care of me.

Three days after the surgery, I went back to Dr. Pedersen's office. My mom came along with me. I didn't have to wait long, and when he came in, he told me he'd talked with Dr. Murday right after the surgery. She told him based on everything she'd seen once they put the scope in, that I had Crohn's disease. The biopsies from my colonoscopy had also indicated I might have Crohn's disease. Side note: I just found out last week that the pathology from my appendix confirmed Crohn's disease. Now, some of you may not know what this is. You may decide to google it later. In any case, I'll just give you a brief explanation. Crohn's disease is a chronic inflammatory bowel disease with no cure. It presents itself in many different ways, and no two Crohn's patients are the same. They won't have the same symptoms, and they won't go through the same remission or flare up cycles. It's an unpredictable disease, and it's an auto-immune disease. I'll tell you right now that I didn't have any of the "normal" symptoms of Crohn's. If I had, they might have considered it as a stronger possibility from the beginning. This is how my Crohn's disease decided to present itself: in an aggressive manner. My small intestine, stomach, and colon decided they liked each other so much that they should become one unit. They started growing together. Forming a mass in my abdomen. When I went in for surgery, that mass was gone because the swelling in the organs had somehow relaxed and gone down. In Dr. Pedersen's words, "it was a miracle". If my organs had continued to fuse together, they would have formed a fistula. This would have resulted in a much more complicated surgery in which part of my bowels would likely have been removed and sewn back together at the healthy parts. Can I tell you how glad I am that all I lost was my appendix? I never had a fondness for that organ anyway. Even though I jokingly told Jake after the surgery that they'd removed my favorite organ. So, back to my Crohn's. According to Dr. Pedersen, most people who have the type of Crohn's where fistulas are involved, have a very aggressive form of the disease. Some of them may have spent years treating their disease before a fistula was formed. Some of them start out that way. Because it's so aggressive, we have to treat it aggressively. This means taking a combination of steroid drugs for at least a year and getting iv infusions indefinitely. The steroids will help with swelling, but they can also cause all sorts of other problems like osteoporosis, bone marrow loss, and blood count issues. They can put you at a high risk of lymphoma the longer you're on them. The iv infusions are done every 8 weeks and take about 3 hours in the doctor's office. They too put you at a higher risk for cancer (pick your poison I guess). So, before I can start any of these treatments, I have to start taking a multivitamin every day, along with calcium and vitamin D twice a day to help prevent osteoporosis. I also have to get immunized against pretty much everything every year since my immune system will be suppressed due to the treatments. This means I have to get more vaccinations than an elderly person or baby. Again, Jake is so lucky he married a hot older woman! Just today I went to my doctor's office and got a flu shot, pneumonia shot, meningitis shot, and a tetanus booster. You can bet I'll be rewarding myself with ice cream tonight because I didn't even cry! Oh, that's another thing you might be wondering. Is there a certain diet I need to maintain now with this disease? It would make sense when you think about it, because everything is happening in my gut, but there is currently no scientific evidence that diet has any effect whatsoever on the progression or presentation of the disease. Of course, if I had food allergies, I'd want to stay away from them. If I found that gluten caused swelling in my stomach I'd be more likely to give it up to try and prevent any problems from occurring. But for now, I can still eat everything I was eating before. And I can confidently say that my love of Del Taco does not aggravate my Crohn's disease. Bring on the chicken soft tacos!

Now let me tell you the best part of this story. What I'm most at ease about with my new normal. Dr. Pedersen. When I went to see him after my surgery, he spent 45 minutes with me explaining everything he could about Crohn's disease, how it's treated, what he felt was best for me, and he answered all of my questions. I apologize to the patient who may have been scheduled after me if you had to wait long. But that's how he is. He's genuine and caring and wants to make sure you have everything you need. He told me he was sorry the diagnosis had to be something like Crohn's disease, but that he was so glad it wasn't cancer. He told me he'd laid awake at night worrying that I had cancer and as he told me this, his eyes welled up with tears. In his eyes, I have a name, and a story, and he cares for me enough to feel that emotion. Now I get to see him every 8 weeks for 3 hours at a time and I don't think I'll complain about it one bit because he's amazing. If you can find a doctor who cares about you in that way, you don't want to let them go. I hope he never retires! Knowing I have him on my side, taking care of me and giving me the best care he can, makes this all a lot easier.

Did you make it to the end? I know that was a lot to take in, but I feel better getting it all out. With the new year came a new normal for me, and it's not something I wanted or asked for, and it won't always be easy, but everything happens for a reason. Some day soon I'll write about all of the miracles that happened and brought me to this point. It'll be just as long if not longer than this. For now I just want to say thank you to everyone who has held my hand through this, offered prayers for me, and just reached out to support me and Jake. The past couple of months have been stressful to say the least, but I believe the worst part is over. I couldn't have done it without any of you and without Jake. I know how blessed I am in my life to be surrounded by the people that I am, and I will do my best each day to never take that for granted.

A Year in Review.. 2016

Wow, 2016 is over already.. I can hardly believe it. Honestly it feels like the year just flew by, and as I sit here trying to remember everything that happened, I'm hoping the pictures in my phone will help to jog my memory.

I'll start with our top ten movies of the year. In 2016 we went to 67 movies! It's really difficult to agree on a top ten, and again, we've decided not to put them in any particular order (except alphabetical). In our humble opinion, these movies are definitely worth watching if you haven't already:

10. Arrival
9. Brooklyn
8. Concussion
7. Eddie the Eagle
6. Florence Foster Jenkins
5. Joy
4. Kubo & The Two Strings
3. La La Land
2. Meddler
1. Sully

Honorable Mentions:

Central Intelligence
Ghostbusters
Hail Caesar
Race

January
Usually on the first day of the year, we go get massages. True to tradition, we don't try to schedule the massages until that day, and each year it gets a little more difficult to find a place that is open. Sadly, in 2016, we didn't get a chance to have our New Year massages, but we still had a pretty great start to the year. I mean, look how happy we were!

February

This was a fun month for us. We never really started celebrating Valentine's Day until a couple of years ago, and this year we decided to go to Vegas. We were so ready to get back to a place that was warm and sunny! Jake had to go to Idaho for work a couple of days beforehand, and he ended up flying to Vegas from Boise while I drove down and met him there. We spent a couple days down there walking around, enjoying the sunshine, eating delicious food, and we went to see Mystere by Cirque Du Soleil. We also spent a few days with my mom for her birthday and helped her with some projects around the house. We started really putting our house together this month too (picture below).

March

We didn't quite get enough of the sun while we were in Vegas so we decided to head to Arizona in March for Jake's birthday. We were able to spend 5 days there, and we had so much fun. First item on our agenda was to spend lots of time laying by the pool in the sun (check). The rest of the time we were there was spent doing things we missed, eating at our old favorite restaurants, catching up with friends, and celebrating Jake's day of birth. This was a much needed relaxing break for both of us.

April

We were finally starting to thaw out from the long, cold winter! Spring was starting to show and we found out this month that we'd be going on a river cruise in Europe in August. Talk about exciting! We started planning and saving and counting down the days. We also discovered a new favorite restaurant this month; the Tiburon. The kind of food you dream about..

May

I turned 30 this month. We went to Moab to celebrate and when we got home, my 30 year old body was sore for a week from all the hiking and the ATV tour we did! We had such a great time though. We've tried, since we got married, to have experiences for our birthdays rather than gifts. Jake surprised me with the trip to Moab and surprised me again the morning of my birthday with the ATV tour. He even trusted me to drive the whole time! I've never been so happy to be covered in dirt and mud in my life. I'm convinced there's no better way to get old!

June

I went to California with my mom this month for a family reunion. Jake was unable to go because of meetings he had for work in Michigan. It was fun to hang out with my mom and her side of the family for a few days though. I drove down to her house the day before we left, then we drove down to Vegas and flew to San Jose from there. My brother and his family were even able to come out and be with everyone. There was a lot of laughing, relaxing, eating, and so much fun to be had.

July

This turned into a busy month for us. Jake's youngest brother, Aaron, got married towards the end of July, and we spent a few weekends doing all the family things that come with a wedding. It was really nice, and we love Lauren. She's been an awesome addition to the family. We also spent as much time as possible outside at the pool relaxing and soaking up the sun. We caught a couple of fireworks shows at the ReAL Salt Lake games as well, and went to Colorado for our nephew's birthday.

August

Oh boy, the month finally came, and we were so ready to go on our river cruise! I wrote all about it here, and it might take you forever to read, so here are just a few highlights. We spent 8 days in Europe. We went to Austria, Hungary, and Slovakia. We loved the people we were lucky enough to hang out with, the food, the architecture, the history, the cruise ship, the excursions.. pretty much everything. It was the trip of a lifetime and definitely the highlight of our year!

September

This was a quiet and laid back month for us. We welcomed that after a busy summer. One of my best friends was married this month, and we went to my mom's house to be there for that. We had many family birthdays to celebrate as well (10 to be exact). 

October

We had our 4 year anniversary this month! It's crazy how time flies. We agreed at the beginning of the year that our Europe trip would really be our anniversary trip, so we just went out to dinner that night for a small celebration and Jake surprised me with some flowers. We also spent time with some friends who visited from Michigan this month and took every opportunity to enjoy the beautiful fall scenery. 

November

We spent Thanksgiving with Jake's family this year in Park City. Jake smoked a small turkey for the first time on our smoker and it turned out to be pretty delicious. We also were able to be a part of our nephew, Zeke's, baptism this month.

December

I can honestly say this month is a total blur to me, even though it's the most recent. I started feeling really sick at the beginning of the month and spent the next 3 weeks either in the doctor's office or in bed trying to get better. I think we're finally nearing the end of that chapter though, and I'm really grateful for that. We were able to spend Christmas with my family at my mom's house. We had a fun few days with everyone and came home with lots of good memories and cool gifts!

2016 was full of really high highs and really low lows, but we made it through, and today is the beginning of a brand new year. It's like a blank page in a new, empty book. We're so grateful for every experience we've had and every opportunity we get to spend with our family and friends. These are the things that matter to us most and the times we truly cherish. I can't wait to write our 2017 story, and we wish you all the best!