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. 

Round 3 Update

I received my third chemo infusion this morning. The process is starting to feel routine and I now know what to expect. First, I check in and sit down in the waiting area. I'm usually the youngest person there by a decade or two and I'm suspicious that some of the others give me sympathy glances. Maybe they are thinking, "At least I'm not that  young!" and if that is the case I am happy to give that to them. They have bowls full of Wether's Originals in the waiting areas if that gives any indication of the clientele's average age . I eat one or two and they are delicious.

I am then taken back to get my blood drawn. They insert a needle into my port, flush the port with saline, and take two blood samples. I can usually taste the saline. The saline is not delicious. Blood tests come back after 15 minutes or so.  I then meet with my oncologists or the nurse practitioner. Today it was the nurse practitioner. For the sake of everyone I have compiled of list of my side effects based on the day of the round (Day 1 being infusion day). This is just what I have experienced in rounds 1 and 2. Things may change during this and future rounds. WARNING: I have colon cancer and poop has become a central part of my existence. If you don't like to acknowledge the existence of poop do not read on.

Day 1: Infusion day: usually take a nap after getting home from infusion. Throat has off feeling and drinking really cold things makes me feel like I have rocks in my throat. I have mild nausea and loss of appetite. I take an anti-nausea pill or two and can still eat.

Day 2: This day so far has been surprisingly normal except for one item. This is Hiccup Day. I get random hiccups throughout the day. I was told only men ever get this side affect (but not all men). I may have less of an appetite but nothing horrible. I also might take a stool softener or two pre-empt some future issue.

Day 3: No more hiccups. Loss of appetite, nausea, and fatigue really ramp up on this day. I try to keep on top of it with meds. During Round 1, I couldn't finish a full day of work. I made it on Round 2 but went to sleep at 7 pm. More stool softener. I usually have some output but it's not much and constipation is the main side affect of the anti-nausea meds.

Day 4 and 5: Basically the same as Day 3. I limit the stool softeners because I know what it is coming in a few days.

Day 6: About the same as Day 3 to 6 but starting to feel closer to normal.

Somewhere in the Day 7 to Day 9 range: Diarrhea attack. Seems to only last about half a day and Immodium helps. The chemo really takes the digestive system on a roller coaster ride. Other than that unpleasantness these days aren't bad and I feel normal. Because I have an ostomy, the diarrhea can irritate the skin around my stoma if I don't put my equipment on correctly.

Day 7 to Day 14: These days are relatively normal besides the mentioned attack. Somewhere in here I seem to get a day or two of depression. I have experience with depression in my past and am on meds but it's possible I'd up my the dosage if things got worse. I don't usually get it as much in the summer so I tend to think it could be chemo related. Or maybe I'm just depressed that I'm constantly thinking about poop. I do get my appetite back on these days. I try to eat healthy and to keep the digestive track happy. I have had days where I felt like I over ate a bit and was worried I might gain weight but so far my weight has been steady since the start of treatment. I also try to get 4 or 5 runs of a few miles in. I walk at least 10000 steps almost all days during the cycle

Finally, my blood tests were all very healthy and normal today. I was told my kidneys had excellent function and my liver was good. White blood cell counts were good. The kids hung out with me today at the cancer center. I don't know how Aden does that with his eyes.