On the mend…

To give everyone an update on Dustin and Gracie’s health…
Dustin has been cancer-free since his tumor was removed in the Fall of 2010. He’s been seeing his oncologist about every three months and just made an appointment for six months out! He has CT scans about every six months to check for new tumors (which will soon be yearly), but all have looked great. He continues his once-a-day ‘chemo’ pill that is specific for fighting his type of cancer cells. He’ll continue to take these for the next two years…at least. (Every time we go, they change the duration. 1 year, 2 years, now 3). He feels great and is able to do everything a dad his age should be doing, (with exception to the extreme herniated disc in his low back that happened on 12/31/11, but lets not open that can of worms!!!)  ;) We’re hoping therapy will help and he won’t have to have surgery. He say’s he’d rather have cancer…no more jumping sports (basketball and ultimate Frisbee) upsets him.

Dustin doing one of his favorite things...holding a sleepy baby.

Gracie is doing remarkably well after being diagnosed with diabetes last February. She’s very smart, and knows her body well enough to know when her blood sugars are getting low. She can even give herself her own shots when she doesn’t have help at school.  It’s been and continues to be an adjustment with our eating/snacking habits at home –  especially with three ‘starving’ (growing) boys! She hopes to get on a pump this year to help out with ‘snacking’ and less shots, especially at school.

Brielle & Gracie

We’re hoping for a better year concerning our health, but if not, we know that the Lord loves us, knows us, and will help us through anything.

My Cancer

So a lot has been going on with our family lately. When some asks, “what’s new?” It’s hard to say “not much.” We’ve certainly had our trials and experiences lately, but first and foremost I just wanted to say THANK YOU to our family and friends who have expressed concern, offered help, and continue to enquire about how things are going.

The reason I decided to write this post is to tell the whole story, that if I had the time, I would share with all interested. Facebook is nice for status updates, but as you all know you only check status updates so often so you can get confused with updates and there are a lot of gaps in the story. Plus, I don’t want to write something that might trigger a pity party, because I certainly don’t want that. So I want to write this to answer everyone’s questions, and perhaps to help support others who may face similar situations. Also, it will be good to have for my posterity.

The Background

I guess I would say things started the last week of September – about 3 weeks ago. I started to get sick. I wouldn’t say it was more than the common cold. By Thursday (Sept 23) I wasn’t feeling much better. I did two things that may have been a catalyst for what happened the next day: 1) I played Ultimate Frisbee even though I wasn’t feeling well, hoping the “burn” the cold out of me. In the process I feel and hurt my neck. I took 4 advil before bed (on an empty stomach) thinking that if I did not I wouldn’t be able to turn my head the next day. 2) I bought a case of juice bottles at Costco thinking I could drown the cold out of me. I drank a lot of those. I was probably sick enough that I should have stayed home from work, but I had some projects to get done before our company’s big annual convention at the Salt Palace the upcoming week.

Sometimes when I drive to work I like to listen to conference addresses on the Mormon Channel app on my iPhone. I generally listen to the latest talks, but for whatever reason, Friday morning (Sept 24) I decided to go back a few years. I listened to Elder Dennis E. Simmons’ April 2004 talk entitle “But If Not…”. I remember that talk because I met Elder Simmons a couple times on my mission as he was the area president, and I really liked that talk.

Here is an excerpt of the end of that talk:

Our scriptures and our history are replete with accounts of God’s great men and women who believed that He would deliver them, but if not, they demonstrated that they would trust and be true.

He has the power, but it’s our test.

What does the Lord expect of us with respect to our challenges? He expects us to do all we can do. He does the rest. Nephi said, “For we know that it is by grace that we are saved, after all we can do.”

We must have the same faith as Shadrach, Meshach, and Abed-nego.

Our God will deliver us from ridicule and persecution, but if not. . . . Our God will deliver us from sickness and disease, but if not . . . . He will deliver us from loneliness, depression, or fear, but if not. . . . Our God will deliver us from threats, accusations, and insecurity, but if not. . . . He will deliver us from death or impairment of loved ones, but if not, . . . we will trust in the Lord.

Our God will see that we receive justice and fairness, but if not. . . . He will make sure that we are loved and recognized, but if not. . . . We will receive a perfect companion and righteous and obedient children, but if not, . . . we will have faith in the Lord Jesus Christ, knowing that if we do all we can do, we will, in His time and in His way, be delivered and receive all that He has. I so testify in the name of Jesus Christ, amen.

I distinctly remember thinking after listening to that, “It has been a while since I have had a hard trial.” And so the story begins…

The Emergency

I got to work feeling as sick as ever. Around 10 AM I went to the bathroom and noticed I had a lost a lot of blood via diarrhea. I don’t think I took it as serious as I should have. I think I had two more similar experiences before finally finishing my projects and leaving for the day at around 2:30.

When I got home Rachel was in a rush to get the kids out the door to a primary activity to practice for their primary program that upcoming Sunday. It was my job to watch Murphy. In the rush of things I was trying to change his diaper and I was getting really light headed. After Rachel left I called her sister Leslie to see if she could get him because I was worried about my ability to take care of him.

After everyone was gone and things were settled down I laid down on the couch to get some rest. I had another toilet episode and this time I was finally getting REALLY nervous because I felt VERY sick now. When I got the strength I stood up to wash my hands. As I was doing so I looked in the mirror and looked really white. I started feeling like I was going to pass out so I got on my hands and knees and then rolled to my back and started to pray. I got the impression to call my home teachers. Fortunately I had my cell phone with me. It took me a minute to think clearly enough to find his number. When I called I explained that I was laying on the floor in the basement and feeling like I could pass out at any time. I said the front door was open. After hanging up I started to get more of my senses. I was able to crawl upstairs and get my shoes on and grab my wallet. Then I sat by the front door waiting for them.

They arrived quickly and I was already feeling a bit better, but they said I looked very pale. They first drove to the church to let Rachel know that we were going to the ER. They then took me to the ER and waited with me there. While in the waiting room they gave me a priesthood blessing which I very much appreciated.

The ER was pretty uneventful most of the night. I was feeling much better laying down there. I had an IV in so I figured I was probably dehydrated and now I would be feeling better and they would send me home. When I got up to give them a urine sample I soon realized that standing was not good and I was definitely still sick.

Shortly after Rachel arrived the home teachers left. As she was talking to me I had to stop talking because I got an incredible nauseated feeling. I asked for a bucket which I luckily got in time before filling it half full of blood. That was a scary experience for both me and Rachel.

Soon after I was wheeled off to do a scope. They suspected I had an ulcer. They put me to sleep to do the scope. I’m not sure exactly how long I was out. But when I woke up I asked, “Am I all fixed?” Rachel said, not quite, but we’ll talk about that later.

Dr. Dickenson was the doctor who performed the procedure. He explained that I had a tumor in my stomach that had a blood vessel that ruptured. He put two small clamps in to stop the bleeding. He said it was a very rare thing. In his 30 year career, this was the 3rd he had seen. While he was talking to Rachel she was concerned about getting all the information right because she wanted to let my brother Toby know, who is a Dr. in Boise, ID. Dr. Dickenson offered to call Toby and explain it all to him, which surprised and impressed us all. He said the tumor was likely benign, which quickly put my mind at ease. I had a tumor in the past that was benign, but that’s a different story!

I spent the night in the ICU. My dad drove out the next morning and gave me a Father’s blessing which provided more reassurance. They moved me out of ICU and I spent one more night in the hospital recovering. I was released Sunday afternoon and told rest and eat well and my blood count was still low.

The Week After

I set up  an appointment with Dr. Sandhu at LDS hospital. It was originally scheduled for Nov 1st, but thanks to some help from kind folks we were able to move it up to Monday, the 4th of October. I spend the week recuperating and doing a few more tests (CT Scan, blood work) in preparation for upcoming appointments. Although my blood count was low, I was feeling great – much better than the previous week. I even attended some convention sessions. I was very confident that this would all get fixed and be “no big deal”.

The Second Week

After my appointment with Dr. Sandhu, I came away with more hi-def photos of the tumor and some ultrasound images as well. He diagnosed it as a gastrointestinal stromal tumor (GIST). He then set up an appointment with Dr. Ott for Friday the 8th of October.

In the meantime I went back to work. I set up an appointment on Wednesday with my primary care physician so I could talk with him and make sure he was in the loop in case I needed an advocate. I was sort of taken back by his deep concern. One of the last things he said to me is, “Wow, you are really taking this well.”

As I was driving home from that appointment Rachel called. She had been on the internet researching GISTs. “Dustin, you have cancer!” It was true. GISTs are cancerous. I don’t know why I never bothered to even ask this of Dr. Sandhu – or anyone else for that matter.

At this point I felt like Peter. I was full of faith walking on water. When I heard the word cancer it was as if I took my eye off the Savior and noticed the waves all around me and started to sink. So I did what Peter did. I called out for the Savior to take my hand. He did and peace returned.

My appointment with Dr. Ott was very comforting. He was so kind. Rachel and I were both very impressed. The first thing he asked was if I wanted to get this taken care of first thing Monday morning because they were setting up the surgical appointments very soon. That was also a big relief to know we could get it taken care of very quickly. He answered all our questions and everything he explained seemed to match verbatim with what we had read on the interenet.

The Surgery

I checked in to Intermountain Medical Center Monday (Oct 11) morning. My parents had driven out from Roosevelt that morning. They were there waiting when we arrived. That was a big help to Rachel as she able to leave Murphy with them and sit with me in the “prep” room. I wasn’t nervous at all. I was smiling up to the point where they wheeled me into the operating room. I was just excited to get this done.

The tumor was about 4.5 cm in diameter and located at the top of my stomach – just at the base of the esophagus. This is what made it slightly tricky and why it required an incision instead of just a laparoscopy. Dr. Ott had to remove a small portion of my esophagus as well as the tumor and the area around it in my stomach.

I guess I knew it would hurt, but I certainly didn’t know how bad. The first two days were the absolute worst, just as Dr. Ott said they would be. At times I remember thinking I would rather die than go through this a second time. Surprisingly, I don’t think the pain from the operation was the worst part. It was having a tube running down my nose into my stomach constantly hooked to a machine sucking liquid out. My throat had really taken a beating. I wanted someone to do another operation to take out my tonsils. Every time I swallowed I felt like I was gagging on them. (I still sort of feel this way). Dr. Ott says I probably got a virus before surgery for how swollen my tonsils where. It really was miserable. I had tubes and running in and out, all over my body and it hurt to make the slightest movements.

It is strange how quickly we can forget these bad times. It has been one week since the surgery and I’m feeling so much better that last week that I have almost forgotten how bad I did feel. I have come to my senses. I would certainly go though that again to save my wife’s husband and my children’s father.

Fortunately I recovered at the speed Dr. Ott predicted. I was release from the hospital on Friday afternoon. It was hard to be so sore and not feel the constant nursing and protection the hospital provides, but Rachel has been so good to me and protective.

I am up walking around. I’m on a soft food diet. I can only eat things as soft as scrambled eggs. This will be the case for at least another week I believe.

My employer has been awesome. They have been very understanding and more concerned about me individually than my productivity at this point. But I have always felt that is the type of company I work for.

The Future

The hardest news to receive in the hospital is when the pathology reports came back on the tumor. I was told that due to the size, if the tumor had a low mitotic index, there would be a 95% chance that it I would be cured and there would be no recurrence. Unfortunately it had a high mitotic index, lowers that number to about 31% chance of no recurrence without further treatment. There is actually a calculator online that gives you these percentages.

So now to help prevent reoccurrence, I will be going on a medication called Gleevec. This will make that recurrence less likely (though I’m not sure what the numbers are at this point). From what I’ve heard and read on the internet it sound like quite the miracle drug, as far as cancer treatments go. Side-effects are really variant based on the person, but may report very minimal side-effects. The biggest problem with the drug according to Dr. Ott, is that if you don’t have insurance, it costs $120,000 per year! Fortunately we do have insurance. We are still not sure how much will be covered. That is one thing we just have to wait and see on.

So in conclusion, I’m doing well. My spirits are high. I’m so grateful again for my family and friends. I had so many visitors in the hospital and I wouldn’t even attempt to try to count them all. I’m grateful for AWESOME doctors and the kind nurses and staff at IMC, LDS, & American Fork Hospitals. I’m grateful for technology and modern medicine. I’m a blessed man.

I know that my God can deliver me from this illness… but if not, I will still trust and serve Him.