The Story of Mutant Ureter Man

WARNING: THIS POST MAY CONTAIN POOP, TESTICLES AND SMALL TUBES GOING UP URETHAS. ENJOY.

Well the last week has been just as exciting as the week before. Is it because we might finally get wintery weather in Colorado? No. Is it because it's 10 days until Christmas? No. Is it because we are seeing the new Star Wars tomorrow? No. Is it because I'm a mutant with double ureters attached to one of my kidneys? YES!!!!!!!!!!!!

Last I updated the blog I was worried about a possible liver tumor. An MRI revealed that to be a false positive and that was great news. Last week I also developed some new pain in addition to the back and abdominal pains. Those of you who have read through the blog may know that way back in March before I had my tumor removed I was having testicular pain. I had an ultrasound on  my parts and nothing was shown. Well the same pain returned to that area and I got another ultrasound. The good news is there was once again nothing to see there. The bad news is there were no answers for the pain. Cut to this Monday (12/11) and the pain in that area was getting more severe. I called the Cancer Clinic and they had no ideas so I called my primary care doctor. He did the standard exam and seemed pretty confident I had an infection so I was prescribed antibiotics. I had also started taking some decently strong pain pills that were masking a lot of my issues.

Tuesday afternoon (12/12) while working I started to feel fairly severe abdominal pain. I left work early and eventually had some wonderful liquidy output that relived the pressure. Later that evening the pain returned and I hardly slept. By morning I felt a little better but not great. I was feeling suspicious that nasty things (well nastier than what was already going on) were occurring inside of me. Now Wednesday (12/13) was the day I was supposed to go the University of Colorado Hospital to consult with the colrectal cancer clinic. After we dropped the kids off at school Carrie and I began the drive to Denver. I just wasn't feeling right so I called both my cancer office and the Denver clinic. They both agreed that I should probably get checked out at the ER. We chose to continue to the ER at UCH just in case I needed any sort of surgery then a surgical oncologist would be available.

In the ER they took blood and I gave a urine sample. They did about 7 different tests on me all of which came back entirely normal. My liver and kidney appeared to be functioning normally and my immune system had recovered since my last chemo session. I was given some oxy to help with my pain. I had to drink some imaging fluid mixed with cranberry juice over an hour and a half. They then carted me off to get a CT scan. After that was over we waited and waited for someone to give us results. Then an orderly came to the room and informed us they wanted me to do another CT scan in a different position. After that we waited for at least an hour before a doctor finally spoke with us. He said it was likely the cancerous mass causing pain but there wasn't much we could do but move forward with my chemo treatment plan which would hopefully shrink the mass. This was somewhat disappointing since I really wanted to know what exactly was causing my various pains. He told us I would soon be discharged and went on his way.

Five minutes later he returned to inform us that the plot had thickened. The radiologist contacted him to inform him that I am a mutant with double ureters coming out of my left kidney. The ureter is the tube that drains the kidney into the bladder. Most people have one tube for each kidney. About one percent of people have a kidney with two ureters. I am finally part of the one percent! The fact that I have double ureters is not an issue. The issue is that one of the ureters is being pressed on by my tumor. This is causing my kidney to back up a little. This is what is likely leading to my various pains.

I was then visited by a urologist who discussed some options. The first option was to put a stent in the ureter. The stent goes in through your uretha and sounds like a really good time. The stent itself can cause discomfort so there is no guarantee the pain would go but the ureter would stay open. The second option is to get tube through my back to the kidney that could help drain it. This would be neat because then I could have poop coming out my front and pee coming out my back. The final option is to manage it with pain and hope the cancer treatment resolves the issue. For now I am going with option three as the other options are generally reserved for dire emergencies or entirely unmanageable pain.

At this point I was discharged and given an oxycodone prescription. On the way home I spoke with my contact at the colrectal cancer clinic. The team of various doctors had still met to discuss my case despite my absence. Their final recommendations was radiation treatment followed by surgery followed by some possible rounds of chemo. I don't have a lot of details about the plan yet but today I spoke with my local oncologists and she is on board. On Tuesday I will go back to Denver and meet with a medical oncologist, a radiation oncologist and hopefully a urologist who regularly works with the clinic. At that time I will hopefully understand the radiation treatment a bit better and will know a schedule.

In the meantime I am trying to figure out the pain meds. Since they are serious opiates I am trying not to go crazy but they help me especially at night. I don't like the idea of taking these pills for weeks and weeks. I'm lucky to live in a legal weed state so I may explore that option and run it by the doctors next week. Until then me and my ureters will enjoy a relaxing weekend.

The Adventure Continues

Many of you heard from me this past Friday with my update. I had a CT scan on Thursday (11/30) and when I met with my oncologists on Friday (12/1) she said the scan was showing something strange in my colon. She ordered a PET scan for me. Well it turns out my update last Friday was a little premature. What I failed to report in my update was that they also did some blood work to measure my CEA (carcinoembryonic antigen). This tests measures a certain protein in the blood that is often produced by tumors. Before my tumor was removed back in April my level was 21. A couple days after removal my level had dropped to 5. Normal for a non-smoker is around 3. On Friday my number was 42. I did not get this results until after I had emailed out an update. My doctor called and told me there is a strong likelihood the cancer was still hanging out and growing. Happy birthday to me!

So I spent the weekend imagining the worst case scenarios (an orange angry tumor with a bad comb over slowly devouring my insides) and the best case scenarios (this was all a plot by the liberal media to make me an advocate for a national healthcare system and really I never had cancer at all). Then on Monday morning (12/4) I went in for my PET scan. A technician injected me with a fat syringe labeled with a radioactive sticker. He told me after my scan to avoid holding babies and puppies or hugging people for a couple hours. After lamenting my ruined baby holding plans, I sat in a recliner for an hour while the radioactive fluid soaked into areas of high metabolism (like tumors) in my body. Another technician escorted out of the recliner and I was ordered to empty my bladder. Sadly, my urine did not glow green. The scan machine looked very similar to the CT machine but was longer. After lying down on the platform my whole body was moved inside the tube where I stayed for about half an hour while the machine did it's thing. Afterwards, I attempted to hug the  technician as he escorted me out but he didn't seem interested.

Today (12/5) I met with my oncologist to discuss the PET scan results. There is indeed another tumor in my colon. She does not believe anything was missed when they took out the tumor in April. Instead this is a new tumor and my cancer cells were resistant to the chemo I was on. There is also a spot in my liver that might be a tumor. The next step is for me to get an MRI to better determine what is going on in the liver. After that I will go through four rounds of chemo with a different drug. Afterwards I will get another MRI and we will determine if the cancer is responding. I will then likely either way have a surgery to remove more of my colon followed by 8 more rounds of chemo.
If the spot in the liver is a tumor it might be treated with localized radiation. In addition to all of this I continue to have back pain and will have a separate MRI next week to determine if anything is going on with the spine.

I am also seeking out a second opinion. I trust my oncologist and think she is knowledgeable and likely correct in her recommended course of treatment. However, at this stage of the game I think I would be remiss to not seek other insights. Next Wednesday (12/13) I will spend most of the day at the University of Colorado Hospital in Denver. They have a very strong col-rectal cancer specific team  and several different doctors will come up with what they think the best course of action is. Hopefully more knowledge and direction will be provided.

I know this all seems somewhat dire but I want everyone to know I am prepared to fight this as hard as I can. I am sad. I am angry.  But I am also hopeful. Thank's everyone for your continued support. I will keep you all updated over the coming weeks.

Round 12

Round 12 of chemotherapy is now done and for now I am past that part of the process. As with my other rounds my main side affect is fatigue. I have not lost weight or hair throughout this process all though Carrie thinks more of my hair is gray now. The doctor asked me this week if chemo was easier or harder than I thought. For me it was definitely easier than I pictured but I certainly don't want to go through it again. 

On November 30th I will have a CT scan and then will discuss those results with the oncologist the following day. If things look good I will be having surgery to take down my ostomy on December 13th. I will be in the hospital anywhere from 4 to 7 days depending on how I am healing. Hopefully, this means I can start 2018 off in a healthy state and 2017 will become a distant memory. I will continue to have scans, bloodwork and scopes for years to come.

Thanks everyone for your continued love and support. I will post again in a month with the results of my scan.

Round 10

I neglected to send an update during Round 9 mostly because life is busy and there really wasn't a lot to update health wise. My mother accompanied for the round and got to live the excitement that is the Cancer Center. Afterwards I had a couple days of feeling tired but seemed to recover quicker than normal. There were few if any side affects and I considered myself very lucky to be this far along with only minor issues. Really for me chemo has been more of a bi-weekly annoyance than a life changing event. It is certainly no picnic but there are many people who have it much worse.

Round 10 was last week. My brother John flew in from Maine to visit and accompany me to chemo. It was great to see him and I enjoyed the company. Once again this round seems to be going mostly fine. I'm perhaps a little more tired than last round but my appetite is already back and I went for my first run today in a long while. The doctor that I saw at chemo told me I'm one of only a few that have made it this far without reducing my chemo dosage. So yeah, more poison for me!

A few weeks ago I had my first acupuncture experience. I was expecting to be stuck with a million needles but it was probably only about eight total. It was very relaxing and the good feeling lasted a couple days. I'm still a little skeptical but will probably give it another try at some point.

Hope everyone is doing well and enjoy their autumn. We had our first snow in Colorado today.

Round 8

I am currently in the middle of Round 8 and I can feel the chemo fog lifting. This has been a standard round with very little new info to report. The fatigue continues to be my biggest side affect. While it is not fun I still consider myself fortunate to have few problems getting through treatment.

As a family we continue to stay busy. On Labor Day we ran a local 10K with Joni and Matt. As usual Maya has plenty of soccer going on. Half her games are away, usually in the Denver area but sometimes further. She plays the clarinet in the school band. Cale is adjusting well to high school. He stays busy with orchestra and has to practice the viola at least 3 hours a week outside of school. He continues to be interested in long distance running and has expressed interest in some extracurricular clubs like FBLA, DECA, and yearbook. Soon he will also start taking some driver's ed courses. Aden is doing well in middle school. He is just starting out on the violin and is learning the ropes. He is expressing interest in basketball, Lego Robotics and OM.

We are very lucky with our busy lives to be getting a lot of meal help from friends and family. This has made adjusting to the new school year plus my treatment schedule a lot easier.

Round 7

I am currently in the middle of Round 7 of my 12 chemo treatments. I am starting to fantasize about life after chemo. I don't know what will happen at that point. I may not be done with it all and even if I am I still have a big surgery in the pipeline. Regardless, I am just going to look forward to the end of chemo. I don't like chemo. The fatigue and nausea were worst this round and seem to be lingering a little longer. I'm still doing pretty well over all but I don't if I mentioned that I really don't like chemo. I recognize that it may be the difference between a long normal life and a lot of suffering but I can still hate chemo.

On a more positive note I love colonoscopies! Okay that statement is not exactly true. The preparation is no fun but I swear it's a lot better than chemo. Did I mention chemo and how I do not care for it? Anyway, I had my first full colonoscopy two weeks ago and the rest of my colon is clean as a whistle. This is great news and very relieving to know I only have to fight one spot. I've had to resist the urge to tell strangers on the street just how clean my colon is.

Life is moving forward quickly as usual. The kids are back in school. Cale has started high school. Maya and Aden are traversing the perils of middle school. So far all is going well. Carrie has gone back to work and is close to full time hours. It really means so much to us that everyone is willing to help with meals and help with my treatment transport during our busy times.

I've said it before but I'll say it again. The support I have received during this time has been amazing. My family, my friends, strangers, doctors, nurses have all been kind, generous and instrumental in making the process a lot easier. Yes I hate the chemo and I can't wait to be done but I will never forgot all that has been done for us this year. Thanks all.

Hospital Stay #1

My only previous brush with an emergency room was when I was 15 years old. I was playing goalie in a soccer game and got my pinky head butted into a direction no finger should ever point. I had long hair at the time and I remember the nurse initially thought I was a girl. This time around I had planned ahead with years of short hair. This time there would be no mistaken genders.

I always hear horror stories of people waiting in ER waiting rooms for hours. I guess I got lucky b/c I was the only one in the waiting area and was called back within a few minutes. I changed into a gown and asked about my pain level. I said it was mild and that I did not require any drugs at the time. A nurse inserted a needle for a future IV. I talked to a PA about my blood tests, my achy stomach and my testicular discomfort. Did I mention this is where the real adventure begins?

Shortly after the PA left a man around my age came in with an ultrasound machine and proceeded to use the magic ultrasound wand to image my you know where. I was playing a mental game of trying not to make awkward eye contact during the procedure. I think he was playing too.

Next came the CT scan. The interesting fact about a CT scan is the imaging fluid they put in you makes you feel like you wet your pants. They warn you this will occur. They warn you at least 10 times but still you can't help to touch your crotch a few times just to make sure you weren't the one person that actually did pee their pants. After the scan I went back to my ER room. At this point I refused to be carted around on a bed so I just walked. I really didn't feel terrible.

The PA soon came and told me I would be staying at least a few nights in the hospital. She mentioned the possibility of needing surgery. Then a surgeon came and his viewpoint was less extreme. He said a should go on IV antibiotics and be monitored for a few days. With that I was hooked up to the antibiotics and taken upstairs to the surgery ward.

In my room I had a more cushy bed. After the initial shock of a required hospital stay wore off the idea of some mandatory rest started to seem okay. I had a TV. I had my phone. Carrie brought me the kindle and a book. I was at the time immersed in the TV series Mr. Robot. This was my chance for some binging Nurses came and went to check my vitals and make sure I okay. Occasionally my IV would be changed.

There were however some negatives. Every evening for 3 days straight I had to get a shot in my stomach to prevent blood clots. This particular shot remains the least favorite needle prickings of my life to date. I also was on a clear liquid diet. This meant apple juice, jello and broth. The apple juice was good. The jello was generic and a little reminiscent of plastic flavor. The beef broth was just awful. Sorry Poudre Valley Hospital but your beef broth truly is the worst. Little did I know how these negatives would compare with my future experiences.

So I watched TV shows, movies, and read. Carrie and the kids would come by at least a couple times a day. The time went by quick and my stomach was feeling much better. I was given regular food to test my intestinal fortitude and it went well.  I was given a prescription for antibiotics to take at home. The doctors seemed fairly confident that I had diverticulitis and it would clear up. After my 3 night stay I was released and all seemed well.