Monday, February 20, 2012

What???!!!!

Well, I never thought I'd start a blog. I also never thought I'd watch my husband and family go through something like this. If you're looking at this post, you've probably already heard a little about what's going on.
A quick catch-up:

On February 2nd Nate went to the ER at LDS Hospital with what we thought was an appendicitis, (which was pretty inconvenient at the time as we were scheduled to leave on our first cruise the next day to the Southern Caribbean). It didn't take long for the CT scan to show that much more was going on. We went from hoping it was a kidney stone or just some bad gas instead of an appendicitis, to hoping it was an appendicitis when they told us they thought they could see a tumor in front of his appendix. How quickly our perspective changed!

They called in a surgeon, who happened to be a surgical oncologist, and took Nate into surgery. His surgery lasted for three plus hours. Many good friends and family came to sit with me as I waited for news. The doctor removed Nate's appendix, the tumor that grew in his appendix, 50 cm of his ascending and transverse colon, a small portion of his small intestine, most of his ommentum, and scraped remaining tumors from his diaphram and sigmoid colon. They also removed 4 quarts (yes, I said 4 quarts) of mucous that is described as having the consistency of lemon jello. He couldn't remove all of the tumors because the surgery was extensive enough, and Nate wasn't adequately prepped.

I never imagined that I'd have to hear that kind of news. Now I can never imagine taking my husband and family for granted ever again.

Nate spent the next 7 days in the hospital. He was diagnosed with Mucinous Appendix Adenocarcinoma, stage 4. We are thankful that his lymph nodes were not involved, the tumors weren't present inside of his colon, and his chest x-rays have been clear.

This cancer is a rare one, with only 500 to 1000 new diagnosis a year in the United States. We made the decision early on not to go online. With so few cases, and so few doctors treating this cancer, we knew that the data would be all over the place. This cancer is a sneaky one, and is often misdiagnosed. The surgeon figured that the tumor had been growing anywhere from 6 months to 2 years. Looking back, we can see the symptoms starting all the way back in the summer of 2010. It actually explained a lot.

As soon as my family heard the news they were on their way from Idaho. My parents came Friday morning, and my two sisters and nephew came on Saturday. They took care of our children and home until I could feel comfortable enough to leave Nate alone at the hospital. My Mom and Dad stayed for the entire week! They stocked my pantry, cleaned my house, and loved my kids. I can't thank them enough! Nate's family also gave so much support. They watched kids, attended the temple, brought Nate things to do, and visited the hospital often to keep us company. We have an amazing family!

The support didn't stop there. Our entire family, our ward, the adjacent ward that we belonged to a year ago, and many more friends fasted for Nate and our family. Meals started coming in, so many friends visited the hospital, I had over 150 texts in the first 2 days, all in reference to Nate. We received flowers, cookie bouquets, cards, and treats. We are overcome with gratitude, and have truly been humbled to know how many people care for us. I only hope that somehow we will be able to express our gratitude to all of these friends and family members, and to our Father in Heaven, and his son, Jesus Christ.

Nate came home on February 9 to recover. The next week when we went to see his oncologist, we learned that this cancer isn't treated anywhere in Utah. There are actually only a handful of doctors around the country that treat it. That was pretty hard to hear. While we weren't totally surprised by the news, the confirmation of it was surreal.

I'm lucky to have a family who can pick up my slack. They've been researching online, calling my insurance, figuring out travel plans, and calling doctors. This gave me the opportunity to focus on helping Nate recover from his surgery and be here for the kids. My family is awesome!

It's been a hard recovery. Nate's been suffering from a partially obstructed bowel, and has lost 40 pounds. He hasn't been able to eat much and has been on a liquid diet. He stays positive though, and for that I admire him so much!

He seemed to turn a corner yesterday, and was able to eat a cinnamon roll! He's had a little more energy today as well! We're grateful for these blessings.

The treatment for this cancer is something called Heated Intraperitoneal Chemotherapy that's done in conjunction with another debulking surgery. They'll remove as much tumor as they can, the first layer of the peritoneal lining in the abdominal cavity, then place catheters, and administer the heated chemo directly into Nate's abdominal cavity. They'll let the chemo slosh around for 90 minutes. The entire procedure can take up to 12 hours. They call it the MOAS...the Mother Of All Surgeries. It's hard to think about facing something like this, but Nate is ready to fight. In total, we'll be gone for treatment for 3 to 6 weeks depending on how his recovery goes.

Our plan this week is to contact 3 to 4 doctors in Houston, San Diego, Spokane, and Boston. We'll be sending Nate's medical history to these doctors and wait a few days to find out who will treat him. From there we'll be interviewing the doctors and hopefully be able to pick one by early next week. Once we choose a doctor and facility, we'll need to get our insurance on board. Depending on how long that process takes, it'll still be a few weeks until we can be ready to travel for treatment. There will be more scans and tests, and tons of planning to do before we can leave.

Everyone's been so kind, and everyone wants to know what they can do to help. The biggest help we can ask for right now is for everyone to offer prayers on Nate's and our family's behalf. We've relied heavily on our faith and the faith of others. We know Heavenly Father loves us and is prepared to bless.

I'll try my best to update this blog as we get any new information. We appreciate all the thoughts, prayers, phone calls, dinners, and words of encouragement. It's impossible for us to convey our gratitude to you all. Please keep your prayers coming as we face a week full of tough decisions.

4 comments:

  1. We love you! You are in our prayers!

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  2. You are in our prayers, too! I'm impressed with how strong you both are! We'll be thinking of you! Jill Arveseth

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  3. We love you guys and please call if there is anything we can do... We are just a phone call away! You will continue to be in our prayers!
    Aunt Wendy and Uncle Brian

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  4. Hi Nat! thanks for your update! look forward to hearing where you will be going.

    love, mesia

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