Round 6

I am now halfway through my chemo treatments. It feels good but six more rounds seems like a lot.

Round 5 was almost a walk in the park. At the insistence of doctors and nurses I stayed on top of my anti-nausea meds and it worked. I had minimal issues other than the usual first few days of fatigue. Towards the end of the round my teeth and gums began to hurt. I also had a couple days of upper back pain. Those things may not be related to treatment but I question everything I feel nowadays. I did have high liver function at the start of Round 5 but luckily those numbers dropped after a week.

At the start of Round 6 my liver function was good but my platelets are dropping. This is normal for chemo but if they got too low I would need a blood transfusion. Low platelets means my blood won't clot quickly and I could bruise easier. Guess my knife juggling days are on hold for now. I am also now on an iron supplement to try and help the anemia I have had since before surgery. My anemic numbers are what sent me to the emergency room when this all started but they have not improved since.  Next week I get my first ever full colonoscopy. Got to make sure the rest of my colon is clean as a whistle. Cross your fingers. To counter balance all the not so fun medical firsts I have experienced this year I have scheduled myself for some acupuncture in a few weeks. Might as well get a positive first this year.

Finally, thanks again to all that have continued to support us throughout the ordeal. Joni is out running this weekend to raise more funds to help us out. School starts in a couple weeks and life will be getting busier so I may be reaching out for some company at chemo or perhaps some prepared meals.

Origin Story Part II

After my experience in July of 2015 (see part I of my origin story), it took about a month before I felt normal again. I couldn't run and sometimes I could only walk gingerly. I lost about 15 pounds from a lack of appetite. However, by the end of August I felt normal and the episode was becoming a distant memory. I was running again and continued to lose weight but was doing so because of exercise and diet. I ran my first race on Thanksgiving and by the following spring (2016) was running a couple of half marathons. I was having no lingering gut issues and was perhaps in the best shape of my life.

In the summer of 2016 we decided to sell our 50+ year old house and buy a new construction home. It was busy period of organizing, fixing random issues, yard sales, showings, and moving a lot of our stuff into a storage unit. I was in the process of training for my first trail half in September and my first full marathon in November. We sold our house quickly with relatively few issues. Our new home would not be ready until January of 2017 so we moved in with the in laws. We also took a family trip to Walt Disney World. While there I probably did the hardest training run of my life. I thought running a 20 miler at sea level in flat Florida would be easy but the humidity and heat really drained me. Even with all the stress, moving, travelling and running I felt good and healthy. In November I ran my first marathon. It was painful but an absolutely amazing and worthwhile experience.

January came and we moved into our new house. I was still running and signed up to run the Colfax Marathon in May. The move itself was exhausting and a lot of work. About 5 days after we moved in I went for a 6 mile run and felt fatigued. This wasn't normal running fatigue. This wasn't the fatigue I felt running through the swampy Florida heat. This wasn't the fatigue I felt as I slowly made my way through the final 6 miles of the marathon. This was different.

At first I chalked it up to exhaustion from the move plus all the accumulated impact running was having on me. In February I had a couple good weeks but never really felt normal. At the end of the month I was on another mid distance run on a very cold day. It was a struggle and the extreme fatigue was setting in again. When I got home I just lied on the floor in front of the fire but could not get warm. The next day I called out from work and missed a few more days over the next week. I was starting to have some gut pain similar to the summer of 2015. I was having chills and fevers By the end of March I was going to sleep at 7 pm every night and the stomach pain was getting worse. I developed pain in my testicles. Finally one day Carrie forced me to go see a doctor.

The doctor I saw seemed to know immediately that this wasn't a flu bug. She suggested diverticulitis. She examined about everywhere that you could exam and ruled out any testicular or prostate issues. She was uncertain but seemed concerned about me. Before I left I had blood drawn.

Later in the day when I was picking kids up from school I was surprised by a phone call from the doctor. "Jason I'm worried about you and want you to emergency room as soon as you can," she greeted me. Apparently I was anemic and had indications of internal bleeding. I dropped my kids off at home and told my wife I would be back in a couple hours. I then drove myself to the emergency room where the real adventure began.

Origin Story Part I

It all started in the cancer causing fresh air of Yellowstone National Park

When I talk to people about my colon cancer the first thing they always ask is if it is fun to poop in a bag? The answer is usually no but it depends on the day. The second question they then ask is how I knew I was sick? The short answer is that back in February and March I was having stomach pains and fatigue. I went to the doctor and eventually ended up in the hospital with a foot of my colon missing and a chemotherapy treatment plan laid out before me.

Of course my cancer origin story has more details and actually goes back further. All the doctors I have talked to have seemed confident that my diet is not likely the culprit because of my age. Even if I only ever ate a terrible diet it's unlikely colon cancer would show up until my later years. Smoking is also a possible culprit but I don't smoke. Okay I admit when I turned 18 I purchased a pack of Marlboro Reds and smoked a couple but I gave the rest away to some very happy underclassmen. I did dabble a bit with weed in college but was always a casual user at best. That really leaves genetics but as most of you know my genetic testing came back with no abnormalities.  Maybe I ate one really bad sausage or those were two really good cigarettes.

So I have no idea why I have cancer. I do however know when I first felt the beast inside of me.  In  July of 2015 we took a vacation to Yellowstone National Park. We saw all the standard tourists attractions and add the end of the trip spent a night in Jackson Hole, Wyoming. For dinner that night we ate at a local brewpub and had some ice cream in the town square afterwards. That night my stomach started to rumble but it didn't seem unusual. The next morning we hiked in Grand Tetons National Park before starting the drive back to Fort Collins. On the way out of town we grabbed McDonald's for lunch. I am mentioning the food I ate not because I believe it caused what would happen but it did likely enhance the experience.

Just south of Laramie, Wyoming, about an hour from home, I suddenly had very sharp pains in my gut. They were the most extreme discomfort I had ever experienced in terms of digestion. I pulled to the side of the highway and Carrie took over driving duties. The rest of the way home I was curled up in a ball on the passenger seat. When we got home I immediately lied down. The pain was intensifying and I was sweating from a fever.

My first thought was food poisoning given I had been eating out quite a bit. However, this episode involved no diarrhea and no vomiting. I certainly wanted one or the other to happen to relieve pressure but things were not working in that way. The pain would briefly flair up to an extreme level that still beats anything I felt over my more recent experiences. If I had known then what I know now I would have gone to emergency room. Maybe they would have done a scan. Maybe they would have removed my tumor (smaller at the time) and I wouldn't have had to do chemotherapy. I did end up going to the doctor for this episode but was told it was the flu. If only I really knew.

End of Round 4 Update

Chemo round 4 is almost over. I am not going to lie. This get a bit rougher every time. Nausea and heartburn have been the big issues and for the most part they have stuck around for the entire two weeks. I am not going to complain too much as plenty of good as happened as well.

My amazing sister has to date raised 5200 dollars through a fundraising website  . She met the initial goal and will raise more by running the Silverton 1000 next month. The money is going towards paying down my 6000 out of pocket costs. Unfortunately, my insurance reset on July 1st so I will be having another 6000 added on. Thanks so much to everyone who has supported the fundraiser and for everyone who has supported me in so many other ways. The biggest positive of this whole experience so far has been discovering just the high level of generosity and kindness extending from my family, friends, community and strangers.

I've sadly been running very little but have been getting out of the house and away from the work desk. Almost everyday I try to hit at least 10000 steps through walking. Getting exercise seems to improve my appetite, fatigue, and generally makes me happier

Today I went to an integrative medicine clinic in Denver to discuss possible treatments to ease my chemo side affects and improve my quality of life. This might include acupuncture, massage, meditation, yoga, counseling, and good nutrition. In the coming weeks I will hopefully be able to explore this avenue a bit more to see what might help. Carrie has been pushing me to drink green tea and the doctor encouraged this so now I will be drinking gallons of the stuff. Oh boy. 

An annual comparison

Things I experienced for the first time in 2016:

1. Political caucus
2. Ran a half marathon
3. Ran a 10k
4. Climbed a fourteener
5. Climbed the highest point in Colorado
6. Ran a 5k
7. Ran a trail half marathon
8. Concert at Red Rocks
9. Disney World
10. Ran a marathon

Things I experienced for the first time in 2017:

1. President Trump
2. Prostate exam
3. Ultrasound of my sensitive parts
4. Hospital stay (not counting my newborn days)
5. CT Scan
6. Morphine
7. Cancer
8. Colon surgery/Resulting colostomy
9. Putting a dog to sleep
10. Chemotherapy


I could list more for 2017 but thought I would keep the lists equal. I'm not trying to be negative. There are some good things about 2017. We moved into our new home and love it. We discovered that we have an amazing support network of family and friends. I just hope my 2018 experience list is closer to 2016.

Round 4 Update

I am currently on day 4 of round 4. Round 3 overall was fairly uneventful. I did have some extreme fatigue on day 3 and day 4.  This round the fatigue hit immediately after infusion and I have spent a large part of the past few days in bed. Today so far is slightly better but I'm sure there will be some extra sleep at some point. After Day 4 of the last round I felt normal for the next 10 days.

I did receive results from my genetic testing. All the genes that were tested came back negative for any sign of familial colon cancer. This does not entirely mean it couldn't be genetic. There is a lot out there they still don't understand. Overall, it is good news and means that only my direct relatives (parents, children, siblings) currently require a higher level of screening. All others should just mention it to their doctor to note in family history.

I don't have much more to post currently. Generally I feel good but the fatigue and nausea seem to get rougher each round. Keep an eye on the blog as I will try to post with more info besides just my updates. Thanks everyone for the love and support.

Ostomy Salad

I wanted to post about my ostomy since it has become a big part of life.

The basics:

There are three types of ostomies. An illeostomy is related to the small intestine. An urostomy is related to the urinary tract. Mine is a colostomy. This means my colon (aka large intestine) has been separated from my rectum and redirected out my abdomen. A small piece of my intestine was turned inside out and sewn to my skin. This is called a stoma. On a good day it looks like a slimy  rose. It has no nerve endings but it  can bleed. This is currently where poop exits my body.

The why:

The surgery that resulted in the colostomy is called a colectomy. Some people have the surgery and are able to be put back together immediately. In my case I was backed up, had infection, and a large cancerous tumor so it was decided the colostomy was the safer route. My body would heal quicker and have less risk for more infection that could delay the start of my cancer treatment.  Luckily, the surgeon is very confident that I can be put back together when I'm done killing this cancer. 

The equipment:

I have no control over when my stoma decides to let loose so I almost always have to have my 'appliance' on. The nurses in the hospital called it an 'appliance'. In reality it's just a plastic bag attached to to my body with a couple different pieces of plastic and wax adhesives. My equipment comes from a medical supplier once a month. My insurance covers a set number of supplies and I'm currently fighting to get that number upped a bit. I have to change the equipment every 1-3 days depending on the conditions. I also have to shave half my belly. I am a very hairy man so it's quite a task.

The balloon:

The bags I use have a charcoal filter system that allows air to escape without any odor being released. The filter seems to fail after about 12 to 24 hours of use. This means the air does not escape the bag and I end up with a small balloon attached to my belly. Because I'm only given so many bags a month I try to make the bags last as long as I can. This means I need to release the air when I get the balloon. The inside of my bag smells like the Devil's port-a-potty. I could win a clear-the-room contest against anyone with a normally functioning digestive system. I'm not exaggerating. I even gag when I smell it and I'm guessing by the end of chemo I'll probably make myself throw up once or twice just from burping my bag. 

The balloon makes for some awkward situations. At home I either go into the master bathroom or step outside to burp. I feel bad for Carrie if I do it in the bathroom. I feel awkward doing it outside if neighbors are around. I once burped the bag in a car with Carrie and Maya. It wasn't a nice thing to do and they immediately exited the vehicle. Luckily, we weren't moving at the time. Work can also be awkward because of this. I can burp in the bathroom but feel bad for anyone who enters the restroom in the next few minutes. Sometimes I just go outside but again feel awkward if people are around. 

The foghorn:

My stoma can make noises very similar to farts. Just like a fart they can be quiet or very loud. Sometimes the intestinal foghorns sound, warning all passerbys of the disgusting rude man in their vicinity. The truth is I have no control over this. As much as some of you may argue, we all have at least a little control over a fart and can choose how we release it. With the stoma I have no warning and it usually surprises even me. I have warned my coworkers and anyone I'm going to spend extended time with. The only real embarassing moment so far was at a game night with some neighbors. While the foghorn and the balloon can be very awkward it can also be awkward telling strangers or new acquaintances about the sounds resulting from last night's pizza. Should I just start with, "Hi I'm Jason and I crap in a bag next to my belly button. Sometimes it makes noises. Please disregard them. I swear I'm not a weirdo." or do I just go with "I have cancer. You should look at me with very sad eyes while I tell my tale of medical misadventure. Also please ignore any strange sounds my body makes because you know I have cancer and only a jerk would judge me!" 

Lessons:

Having an ostomy is scary and very strange at first but you quickly adapt. I don't think about it too much unless it is ballooning or foghorning. I need to be smarter about what I eat not just to help the cancer fight but also to reduce the gas. Even though I outlined some awkward situations above I really find it nothing to be embarrassing about and will talk to anyone about it if they are curious. In the end I probably won't create an ostomy scrapbook but I have developed a strange affection for the little piece of colon hanging out of my hairy belly.