PICC My Feeding Tube Down My Nose

I've been such a bad blogger lately. But to be fair, I haven't felt well enough to do it. Here's an update on the last few months.

In December I had my take-down surgery at LDS hospital for my j-pouch. Unfortunately, the doctor found that my intestines had been wrapping up in weird position while I had my ileostomy and I had a lot of damaged small instestine. Well he fixed that by cutting out 40 cm of my small intestine. I then spent a week in LDS hospital with a few scares of serious nausea but I eventually was able to eat enough for them to send me home.

Well just like my last surgery, things got worse at home. I started hurting when I at anything and had to go to the ER a few days after being home. Dr. Kim rushed down after one of his surgeries to see me cause my x-ray and CT scan looked so bad he thought I would need emergency surgery. But then when he saw me he said I didn't look as sick as my scan showed. He decided to hold off on surgery and just monitor me. That meant readmission.

I wasn't allowed to eat so they put in a PICC line. Man I hate PICC lines. It's so hard for them to place one in my arm (we always have to try a few times of poking my arm) and it's just the tube sticking out of your arm and it hurts and it's annoying. But the PICC line has preserved my life more than once so I just sucked it up and got it placed.

A few days later they placed my feeding tube. I was getting worried cause I wanted to be home for Christmas but that was looking less and less likely. Well luckily, on Christmas Eve I had some awesome nurses who pushed to get me released and my doctor is awesome and said that if I wanted to go home he wasn't going to make me stay, so at 9 PM on Christmas Eve my dad drove me to their house.

I felt horrible but I was with my family for Christmas and that's all I wanted. It was weird having home health care come over on Christmas Day to show me how to manage my feeding tube.

So I did the feeding tube from the end of December through mid-February. I was still having pain but it was getting a little better and once again, Dr. Kim was awesome and said that I could get the feeding tube out if I felt like I could eat enough to survive.

So now it's been a few months off the feeding tube and I can't gain any weight no matter what I eat and eating still hurts really badly. So we're starting the testing process again to find out what's wrong. Today I'm getting an endoscopy and then next week a CT Scan.

I sure hope that whatever is causing my pain isn't too serious and I don't have to have surgery cause we've decided my body just doesn't do surgery well. I'll let everyone know what happens when we find out more.

Thanks for everyone supporting us!!

Symptoms

Hey everyone! Thanks for all the comments. Sorry I don't respond to them, but I don't think I even know how to. Well chemo is done. A lot of people ask me what it is like. So I wanted to list all of the symptoms that I've had so you can see how "FUN" chemo was for me. I hope I never have to do it again. Chemo is different for different cancers so this isn't necessarily what other people experience during chemo.

Symptoms:
- Lots of nausea (of course with occasionally up-chuck-o-ramas)
- Restless legs at night (super annoying when you want to just sleep)
- Fatigue (I never used to take naps but I do now all the time. Go to bed at 8 and wake up at 8 during chemo)
- Cold sensitivity (I could not drink anything that was even room temperature or it would hurt my mouth and throat so badly. I could touch anything cold or it would sting my hands and feet. This was, for a while, the worst symptom.)
- Mouth sores (Not too bad actually. I would just swish some salt water a few times a day and they would go away pretty quickly.)
- Really sore hands (This one was so weird but my hands would get so sore they would turn purple and I could even touch anything. It really put a damper on getting to play video games.)
- Chemo brain (I seriously have such a hard time focusing on stuff. Can't multitask or even pay attentions sometimes and very forgetful.)
- Diarrhea (umm yeah)
- Reflux (My throat would burn really bad but I got some medicine and it stopped bothering me completely.)
- Taste buds died (Food became a disgusting thing. I never wanted to eat and still am getting over this one.)
- Thrush (This turned into possibly my worst symptom near the end. My tongue would turn completely white and everything tasted even more horrible on top of the taste buds thing.)
- Cold sores (They stink.)
- Hair loss (I'm really lucky I had thick hair before or I would have had to shave my head I think. Every time I wash my hair I get a ton of hair on my hands. Hopefully this comes back soon.)

I also wanted to thank everyone for the meals, gifts, support, prayers, and everything else. It really means a lot to us. We have been blown away by the love others have shown us and have learned that that is pretty much what life is all about. I hope I can get back to normal and start helping others a little bit more.

So now I'm in remission and am supposedly cancer free. Every 3 months I will get a blood test called the CEA. Normal people are at 0-5. I was at 23 before surgery. Now I'm down to 1. I will get a CT scan every year. So yeah I got to drink that gross stuff and they put an IV in and it makes you feel like you're peeing your pants. I will also have the luxury of getting rectal scope exam every 6 months. Nothing is more comforting than being exposed and violated.

Going to the doctor and feeling like crap have become very normal to me. But I can't wait to move past all this and get back to a more normal life. (I don't re-read what I wrote so sorry if it's messy.)

Halfway There

I wanted to start this post off thanking everyone for your support and prayers. We feel them everyday in out lives. Before all of this, I never realized how much support can be given just by praying for someone, but now I know that prayer is real, God is hearing everyone’s prayers on our behalf and he is blessing out lives for it.

There’s a saying at the cancer center that I look at every time I leave after treatment. When I leave, I’m feeling really tired and horrible and I look at the wall in the hallway and read the quote that says something like this, “Be joyful, although you’ve considered all of the facts.”

Finding joy amidst this trial has been something Megan and I have strived for. Just because I have cancer and don’t know the outcome yet, does not mean it has to take over my life and my thoughts all day every day. As hard as it is and how quickly I’m reminded of it everyday when I start to feel sick, I have found joy during this trial.

My last treatment was my 6^th treatment out of 12. Megan and I celebrated it with an incredible date night in downtown Salt Lake. We went to our favorite restaurant called Kyoto. It’s a little Japanese place and it has the most incredible food. It actually even tasted good to me. My taste buds seem to be completely gone, but luckily I was able to taste the sweet teriyaki sauce. Salty things are really hard to taste but sweet things have been a little easier to taste.

After dinner, we went and checked in at the Hotel Monaco and then went for a walk over to the City Creek mall. Through all of this I don’t really care about shopping for anything cause I’ve lost so much weight that if I bought clothes that fit me now, they probably won’t fit me a year from now if I can gain my weight back. We ended spending most of our time looking in the Disney Store anyways for stuff for Halle and Lily.

Then we went back to the hotel and played monopoly. I was reminded of how competitive I am in board games. It was so much fun but of course Megan is luckier than I am (I haven’t had the best luck this year) and I was going crazy. Of course, I couldn’t stand to get beaten so we’ve played monopoly like 4 more times since then so that I could at least beat her once. We had a blast playing and then we watched Dan in Real Life.

I have a hard time sleeping lately. My mind starts to wander. Lately it’s wandered back to the day I was diagnosed. What a weird day. It doesn’t even seem real. Or my mind wanders off thinking about 24, which I hadn’t seen until last week and am so addicted to now.

I’m going in for my 7^th treatment. I wanted to tell you what the cancer treatment room is like for me. I go sit down in a comfy recliner and wait for the nurse. I’m already starting to feel a little sick at this point just because I know how the drugs are going to make me feel. The nurse comes over and accesses my port, which involves putting an inch long needle into the port on my chest. Doesn’t hurt a bit though cause I get some numbing cream. Then they draw some blood. The port catheter runs straight to me heart so that blood comes out mighty fast.

Then the nurse goes and checks my blood counts (white blood cell count, red blood cell count, etc.). This used to be a scary thing for me cause I went through a time where my counts were very low and I couldn’t get treated because my immune system was too weak. But now that I’m getting a $6,000 shot each treatment to boost my counts, I don’t really worry about my blood counts being too low.

Then the treatment starts. A few treatments ago I had an allergic reaction to the chemo drugs so they start me off with Benadryl now. I’m pretty sick of Benadryl cause I fall right asleep and it makes me tired the rest of the day. After the Benadryl I get two different nausea medications. Those help out a lot!

After those, we’ve been at the hospital about and hour and a half already. Next comes the chemo. Starting with the first drop, the symptoms start. I instantly can’t drink anything cold cause my throat will hurt badly. I can’t touch anything cold. My head starts to feel kind of fuzzy and starts to hurt a little. I don’t want to eat or drink anything.

After 2 hourse of treatment, I get a pump attached to my port that is going to give me chemo for the next two days. I’m pretty sick of carrying that thing around. But once it’s attached, I’m free to go. At this point, I’m still pretty tired and don’t feel like driving so whoever is with me drives me home.

At home I feel really sick and just want to sleep. I don’t want to eat or drink, but I force myself too so that I don’t get dehydrated or lose a lot of weight. Eating is really the worst. This all lasts until about Saturday (chemo starts on a Tuesday). Come Saturday I’m starting to eat more cause I want to and can drink a lot easier.

The hardest part lately is that I get thrush after every treatment. And the medications they’ve been giving me don’t make it go away until about Sunday. That makes everything taste horrible. Only babies get thrush right? Only old people get colon and rectal cancer right? Nope, I am an old man and a baby all in one. I am a rare piece of work.

Just the thought of chemo makes me cringe. Anytime someone mentions it I start shaking my head just like you do when you eat something sour. It’s pretty funny actually though and we joke about it at home.

Living life with cancer is nothing like my normal life before cancer. I am extremely grateful for everyday. In every prayer I plead that I can be cured and that I can see my girls grow up and grow old with Megan. I want get old so badly. Live life with cancer makes every laugh sweeter, makes every hug mean something more, makes every tear brings you closer to God and remind you of how much he loves you and is there for you even though you’re struggling. You’re freaked out of doing anything wrong cause let’s face it; I need all the blessings I can get.

I’m still here and I I’m still fighting. It’s not over yet and it won’t be very soon. But when it is, I’ll move on, carrying something with me that not everyone gets to have at such a young age, the lessons learned from staring death in the face and not letting it get you down, but fighting through and surviving and knowing just how precious live and how important it is to share it with the one you love. 

Mary Jenkins

You may think you've heard of MJ but I'm not talking about Michael Jordan. No, I'm talking about Mary Jenkins. Mary Jenkins is a big part of our lives now.

We’d been thinking of names for my ileostomy bag. Poo poo bag was just getting too old. I would be outside with Halle and she would be playing with the kids and then she would say to the kids, “Hey, do you want to see my dad’s poo poo bag?”

Well I would tell her that it is a secret and that I can’t show it to anybody, mostly because I don’t want the kids to all start throwing up on our grass. Or I don’t want to explain it to them. Yes children, the inside of my body is sticky out of my tummy. Yes, children that is fecal matter in a bag. No, I don’t poo like normal people, this is how I do it. It would just be a sad strange discussion with little kids.

So I was playing with Halle and Lily downstairs when I asked Halle, “Halle, what should we name my poo poo bag?”

She replied, “Hmm, Mary Jenkins.”

I busted out laughing and then she did too. I’ve tried many times to figure out where in the world she learned the name Mary Jenkins but we have no clue where she got it from.

Cancer update: Yep, if you haven’t heard, I’m still doing the cancer thing. It’s like it’s a part of me now or something.

I’m on my third chemo treatment. The first and second one were pretty spread out because my immune system was too weak to handle the chemo drugs. So we waited, and it was awesome. I finally started to feel like myself. I was eating more normally and starting to gain weight. Plus, eating didn’t make me feel sick like it used to. Things were great.

But of course, my weak body would muster up enough strength and produce some white blood cells and we were back to chemo. From now on though, since my immune system is pretty slow and weak they are going to give me a shot after every treatment. It is called Neulasta and it is expensive. One little shot costs $6K! Thanks insurance for picking that up for us.

My chemo side effects are weird and annoying but there is an end to the madness so I’ve just got to keep pushing on through it.

My taste buds have died or changed so much. Everything tastes so much different and there is a horrible after taste. Things that should clearly taste wonderful do not taste that way at all. And I don’t know if it’s linked to this but my tongue is white. Let the tongue scraping begin.

My throat is so sensitive, especially to cold things. If I put anything cold down my throat it kills and makes me start to gag. It really makes eating awesome.

The cold sensitivity doesn’t end there. My hands touch anything that is below room temperature and they start to tingle. Even if I go outside and it is warm but there is a cool breeze, the tingling comes. So I’ve been wearing some gloves to protect them. I may not be able to save a colon, but I can save some hands.

The nausea is pretty bad and I have to force myself to eat. I’m trying to eat more fruits and vegetables but I mostly end up just eating whatever will stay down.

It sounds pretty bad and for the most part it is. But I’m so glad there is something that I can do to make sure that I see my kids grow up and I get to grow old with Megan. So let’s do this 9 more times and then let’s move on with things.

The letters MJ mean a lot to me. Mary Jenkins is saving my life and I've always loved Michael Jordan.  As the commercials have been saying about Michael Jordan's flu game, “You win from within.”

5 – FU Cancer!

Well it’s been a long time since I’ve been on the blog. I’ve wanted to update everyone for a while now but I just haven’t felt well enough to do it. There’s so much that’s happened in the last month or so that it seems like it has been a year.

Well I had surgery on March 23. The surgery was to remove all of my large intestine and some of my rectum. I was given a temporary ileostomy which will be converted into a j pouch after my chemotherapy. (Yeah I had to look those words up too to see what they were). The surgery went really well and my recovery seemed to be going okay. My main problem that week of recovery was that I wasn’t able to urinate on my own. So after a week at the hospital they sent me home with a catheter. I hate catheters and have way too much experience with them as you’ll see in a bit.

Being at home was nice but I was uncomfortable all the time and missed by hospital that could adjust just the way I liked it. The more food I ate the sicker I felt. Little did I know, my small intestine hadn’t woken up and I was developing a rare case of pancreatitis.

Two days after being home from the hospital I started to get really nauseous and eventually began throwing up many times during the day. Since it was a Saturday, we weren’t able to get a hold of my surgeon so we got the on call doctor. At first he just said to only drink liquids and that it will pass. Well, it didn’t. After 4 attempts he had me sent to the emergency room.

By this time I was in a lot of pain and constantly on the verge of throwing up. I’m getting nauseous just talking about it. They did a CT Scan and said I had a partial blockage in my small intestine and pancreatitis. They sent me in an ambulance back to LDS hospital where I’d just come from two days earlier. The ambulance ride cost $2,500!!!!!!! Just for drive up to Salt Lake! You'd thing we had a party or they gave me a lot of drugs on the way up but nothing, I just laid there watching Megan follow us. It was pretty much the stupidest ambulance ride ever.

The fun began at LDS hospital. They stuck an NG Tube up my nose, down my throat and into my stomach. One of the most uncomfortable things I have every experienced, and by this point, I’ve experienced a lot. The tub gagged you constantly and I continued to throw up. The purpose of the tube was to suck out every thing in my intestines since they were pushing the food down.

I wasn’t allowed to drink or eat anything. I just sat there for three days getting my guts sucked out of me. My blood levels that indicated pancreatitis kept increasing. Since I wasn’t getting better the surgeon decided I couldn’t go much longer without food so they placed a PICC line in my arm. That was a struggle and they had a hard time getting it to work but eventually it did. The pick line is a glorified IV in your arm that goes directly to your heart.

They used the PICC line to give me food through an IV. I didn’t like my PICC. It kept bleeding when it wasn’t supposed so they’d have to change the dressing on it and that hurt! But the PICC was nice too because they could draw blood out of it.

For those of you who haven’t spent a night in the hospital, the little night people (no offense Chad) come around in the middle of the night and wake you up so they can poke your arm and draw your blood. It gets old fast. So the PICC avoided the poke, but not the wake up.

After a few days of the PICC, they pulled out my NG Tube and replaced it with a smaller tube that they fed into my intestine as a feeding tube. Once the feeding tube was placed I was able to start sipping water.

IT WAS AWESOME!!! I loved sipping the cold water. It’s funny how a lot of things I used to take for granted had been taken away from me and wonderful it was to get one of them back.

I began recovering finally and eventually was allowed to eat. As we got closer to getting discharged my urologist gave me two options: have a full time catheter, or I can do what they call “straight cathing” where I would put a catheter in myself to urinate several times a day. The thought of doing that to myself terrified me. I decided I would try it out because it would be nice not to have a full time catheter to carry around. My first time burned like crazy!! I was convinced this was not for me and had the full catheter brought to my room. But then I tried again. Still burned but it wasn’t as bad.

So to this day I am still straight cathing about 4 times a day, hoping that my bladder function returns to normal. It’s starting too I think.

So I was discharged finally, with no tubes to hold me down. I went home and started immediately feeling sick. WHAT THE HECK! If I was going to get sick again why couldn’t it have happened at the hospital. I went on an all liquid diet for a few days and the sickness went away.

That’s my go to treatment now. I’ve felt sick a few times since I’ve been home and I always go to a liquid diet and it eventually goes away.

By this point I had lost 40 lbs. And if you know me, I didn’t look like I had 40 lbs. to lose.

But as of right now I’m feeling much better.

I started chemotherapy yesterday. My treatment is called FOLFOX. One of the drugs I’m on is called 5-FU so I thought it fitting to name this post FU cancer. It’s nice to be fighting this thing finally. We'll see how the side effects go but it’s worth it.

Thanks for all of your support. I know from your end it may seem like it goes unnoticed but from my end I feel all of your thoughts and prayers strengthening me and it really does make a difference. God is there with us even in the hardest of times. He is lifting my burdens and the burdens of my family and part of that is thanks to you.

John 16:33 “These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world.”

This is a picture of my first day at chemo treatment. I was by far the youngest person there. Everyone looked at my like "what's he doing here?" I've got a port in my chest which the nurse can access and give me the drugs through it so the drugs go directly to my heart and then my heart blasts the chemo through my body and it kills the cancer. At least that's what it's doing in my mind.

I've Got What?

So after I was diagnosed, appointments came flying at me from every direction. They immediately set up a CT scan so they could check if my freakin cancer has spread. I’ve had one CT scan before when I was 18 and got my appendix out and they made me drink two bottles of pure crap to light up my insides for the scan. Surely, things have improved in ten years. Nope. I got to drink the same stuff as last time. But I will say that it was cold and I’ve been drinking a lot of weird stuff lately so it wasn’t actually too bad. I realized then that I’m going to have to just get used to weird or painful sensations on this trip through cancer lane. Also, they hooked me up to an IV that would put more contrast into my blood stream so it would show up better on the scan. The contrast makes you feel warm and it also makes you feel like you peed your pants! It was AWESOME!

While we were waiting and drinking the butt drink, I declared Megan as my cancer assistant! She has been so awesome so far so I knew she would be perfect for the job. But really, she has been so organized. I have tons of appointments, tons of paperwork, tons of pictures of the inside of my body that I wish didn’t show the tumors they show, and lots of things to keep track of and she jumped right on everything. Every appointment we go to we have to fill out the same paperwork about my health history and Megan just grabs it and starts filling it out. And honestly, it helps me out so much. I get to just sit there and relax for a minute before I go in and see a doctor and find out more about my 60 year old man’s disease. I am Benjamin Button. Megan was all over appointments and all I had to do was go with her and she would make sure I did what I was supposed to.

Megan’s dad has opened so many doors for me. He is a doctor down in St. George and right when he found out about my condition he started making phone calls to make sure I saw the best doctors possible. For example, we started researching surgeons and found a Dr. Kim who specializes in Colon and Rectal surgery. He is also one of the best in Utah. Megan called his office and they didn’t have an opening until May. WHAT?! My cancer can’t wait until May! Well Megan’s dad contacted a director at IHC and what do you know, Dr. Kim’s office called me on Monday and set up and appointment for Wednesday. Same thing happened with my oncologist.

So on Monday I got my rectal ultrasound that took a look at my lower tumor. Man, it was uncomfortable being awake during that. But there was nothing but good news from it. The tumor hadn’t spread through my colon, they couldn’t see any lymph nodes having cancer (which means it hasn’t spread), and there is enough room that they can hook me back up after my surgery so I can poo again. Monday was the day we started feeling way more positive about this whole situation.

Tuesday was a great day too. We met with my oncologist who told me that they expect to cure me. He said he wouldn’t be surprised if my cancer has spread to some lymph nodes and that would mean 6 months of chemo after surgery. He also warned me that my surgeon, Dr. Kim is thinking it is best to remove my entire colon. I had never heard or even considered that so that scared me. They also told me that I would probably do radiation before surgery. I had a rough night coming to grips with losing my entire colon.

Tuesday was also the day I realized something very important. The doctors can do lots of things to me and they can take a lot out of my body, but please, please don’t take my hands!

On Wednesday I met Dr. Kim. He is awesome. I feel so much better about everything after having met with him. He explained that they are going to do 5 days of radiation on me, then let me rest a week. Then I will have surgery on March 23. I will be in the hospital about 4 days. They are going to remove my colon and attach my small intestine down there so that eventually I will be able to go to the bathroom. But until everything heals down there I will have a temporary port coming out of my stomach with a bag attached to catch all of my stool. That is going to be so weird to get used to. I will have the bag for 2 months or 6 months if I have to do chemo.

On Thursday I went into the radiation clinic and got measured and set up so that they can start doing radiation on Monday.

So that was my week. We are all feeling so much better about the outcome of this. It’s going to tough to get there but everything looks so positive. Thanks to all of you for your support. We couldn’t do this without you. So just know that your prayers on my behalf are getting answered and I notice them.

The Longest Day of My Life

I created this blog so that I could share my journey fighting cancer with others. I’ll try and keep any gross details out of this but I can’t promise it. I guess I’ll just have to pull the cancer card on you and say “hey, I have cancer, give me a break.”

On March 1, 2012, I was diagnosed with colon cancer. In September of 2011 I had quite the surprise when I went to the bathroom. Now, maybe I’m not normal but I check the toilet paper (you know you do too). Well the toilet paper was all bright red! I panicked and thought the worst. I told family members and they helped me feel a little better about. Blood could mean a lot of different things. I went to the doctor and the initial diagnosis was hemorrhoids. He said, you can’t be positive though and if the bleeding happens again I should go get a colonoscopy. Well what do you know, in December I saw some blood again. It wasn’t nearly as much though as last time and I said to myself that it can’t be anything too bad. But I decided that if it happened again at all I would go in and get a colonoscopy. Well a few months later there I was looking at some strange toilet paper. I also had been experiencing quite a bit of bloating right before I was going to have a BM. It was time to go to the doctor. I went to my primary care physician and he told me all the things that it could be but that the only way to really know was to get a colonoscopy. He got one set up for me two days later, March 1, 2012.

For those of you who don’t know, preparing for a colonoscopy is by far the worst part. I had to buy some laxative at the store. Lots of laxative. The day before the appointment I wasn’t allowed to eat anything. I could only drink clear liquids. That night I had to drink a bunch of the laxative. About an hour later I was running to the bathroom and that kept up for most of the night. My appointment the next day was at 7 AM. I had to wake up 4 hours before my appointment and take the rest of the laxative. So I stayed up from 3 until 7 back and forth to the bathroom.

We got to the hospital and they put me on an IV. They rolled me into the procedure room and put a solution into my IV. They told me I would start to feel tired. A second dose and I was out.

I woke up while they were rolling me back into my room and I was feeling good! It was the best nap I’d ever had. And I was positive, feeling optimistic about the outcome of the test. I was happy and joking with Megan. That nap was great!! I could use a little bit of that stuff right now.

Then the doctor walked and spoke the words that will follow me for the rest of my life. “I’ve got the results of your exam and it’s not good.” WTF?!!!

He proceeded to show me some pictures of two tumors that were supposedly inside my body. Uh, are you sure those are the right pictures cause I’m 28? Yep, those were pictures of me. Now they said they did a biopsy on the tumors but they told me straight, this is cancer. I had never quite understood what it was like when in the movies they say to themselves that it must be a dream and they needed to pinch themselves to wake up. But that is exactly how it felt. This can’t be real!

Megan and I were blown away and held each other. It was unreal, we’d never felt worse in our entire lives yet we’d never felt closer to God at the same time. I was literally staring death in the face and I have to admit, I was scared.

We then setup like 5 million appointments and we were off on the race to beat cancer. The beginning of the race though is slow. There are so many unknowns initially. So many appointments to figure out exactly what needs to be done to beat it.

We got my blood tested a few hours later. A CEA blood test. I was told that a normal person gets a result of 0-3, mine was at 22. I met with a surgeon who told me that my condition was too complicated and that I would need a specialist. A colorectal surgeon. So there Megan and I were, too busy to think about it, sitting there wondering if we could count how many different doctors I had to see, trying to wrap our heads around all the information.

I couldn’t ask for a better family. A family who has already been through a lot of trials, especially recently. There words were just what we needed. 

The longest day of my life was over. And it only gets better from here.

Lesson learned: if you have any changes in how your body functions no matter how small you may think it is, go get checked.